A new survey by the Physician-Patient Alliance for Health and Safety (PPAHS) found that 44% of patients have delayed or avoided doctor’s visits because of fear of COVID-19. This percentage was even higher among those diagnosed with certain chronic conditions, such as cardiovascular disease or respiratory illness. Both are risk factors for poor outcomes.
Before diving into the results of the survey, let me describe the circumstances that led up to the survey.
In April 2020, PPAHS launched Virtual Patient Care, a free online chat line where patients can speak with a team of experienced registered nurses in order to get personalized answers to their questions.
The telehealth project and resources are thanks to the generous support of the BMS-Pfizer Alliance, as well as the efforts and resources of the following organizations:
According to Michael Wong, JD, Founder and Executive Director of PPAHS:
“Under current COVID-19 conditions, patients face the burdens of social distancing and increased difficulty in reaching clinicians busy with emergencies. Telehealth has proven essential in addressing patients’ pressing health needs and ensuring good patient-to-clinician dialogue. With today’s launch of Virtual Patient Care and the CV Virtual Clinic, vital telehealth benefits are now also extended to Afib patients in need.”
As of October 5th, 2020, more than 6,000 people have visited Virtual Patient Care. Many of them have expressed both a fear of COVID-19 and a subsequent hesitancy to seek medical attention.
For instance, one individual wrote in, “More than a year ago, my doctor said I had Afib. What risks do I have for getting COVID-19?” Another patient described a sharp pain in their side, asking, “Should I be concerned? What do you think this may be? Should I see a doctor?” One other said simply, “Shortness of breath and extreme headache – go to the ER?”
In order to better understand and address these patient concerns and serve the community, PPAHS conducted an online survey with its followers from August 25 to September 7, 2020.
About half of the 184 respondents (44%) reported that they had delayed or not gone to see a doctor, dentist, or another healthcare provider during the pandemic. PPAHS’ results are consistent with other research that shows about 4 in 10 US adults have avoided medical care due to COVID-19 concerns.
Unfortunately, PPAHS also found a higher percentage of medical distancing in respondents with clinical conditions that increase their risk of a poor outcome if infected, such as,
This increase may reflect information from the Centers for Disease Control and Prevention (CDC) that identified cardiovascular and respiratory disorders as underlying medical conditions that may increase the risks of developing severe illness from COVID-19.
However, these patients are also those who may be most in need of routine medical care for their chronic conditions. And, that may face dire consequences if their care is delayed.
Research has found that patients have delayed seeing a doctor, resulting in more at-home heart attacks and delayed ED visits during the pandemic. One study found a 23% and 20% decline in ED visits for heart attacks and stroke, respectively.
As patients have begun returning to EDs, health care providers have reported seeing worse symptoms due to delayed care. Such delays are particularly significant for patients with AFib or COPD because they are at a higher risk of heart attack and stroke.
The results of the PPAHS survey also reveal evidence of undiagnosed or untreated cardiovascular conditions. Of the 88 respondents that reported “no diagnosis” of cardiovascular disease, several included comments — such as “cardiac dysrhythmia” and “heart murmur.” This suggests that they may have an undiagnosed condition. Further, they may not be taking appropriate precautions or being monitored for further disease progression.
Cardiovascular disease can be treated with changes in diet and exercise if the condition is detected in its early stages. Left undiagnosed, cardiovascular disease may have serious health consequences.
These incidences of delayed diagnoses during COVID-19 have also been observed in the field of oncology. These delays are expected to result in more advanced stages of cancer and poorer clinical outcomes.
Another objective of the PPAHS survey was to examine medication adherence in the wake of the COVID-19 pandemic. One patient submitted a question to the nursing team on the Virtual Patient Care chat line asking, “Been taking anticoagulants for 6 months. Feel fine now. Can I get COVID if I take it?”
Patient adherence to physician-prescribed medication, in general, has consistently been observed to be poor (~50%). An analysis of the US National Disease and Therapeutic Index reveals that there was a 26% decline in visits for new medications during the pandemic.
In the PPAHS survey, two out of three respondents reported on their medication adherence. Positively, the rate was higher among those diagnosed with certain chronic illnesses:
The survey found that the number one reason for delaying or not going to see a doctor, dentist, or other clinician was fear of contracting the coronavirus (50%). Patients diagnosed with atrial fibrillation and other cardiovascular diseases are particularly fearful. Fully 92% of those respondents extremely or moderately concerned about getting COVID-19.
One respondent even wrote in just one word: “Panic”. Some attribute this fear to news coverage of coronavirus outbreaks which have driven a public perception of all medical facilities as germy and overrun with highly contagious COVID-19 patients.
The next reasons for delaying or not going to see a clinician included:
This has been a persistent problem during the COVID-19 pandemic. Medical professionals and patients have grappled with what procedures and visits are considered “essential”.
According to recent reports by the CDC, routine immunizations for young children are among the medical services delayed or canceled during the COVID-19 pandemic. One study also found that 50% of cancer patients experienced delay or disruption to their health care, with one in eight not knowing when their treatment might resume.
The next set of reasons included the following:
Being unable to contact or make an appointment with a doctor may have been a factor in these responses. However, not thinking the symptoms were serious enough raises concerns about the consequences of undiagnosed conditions and delayed diagnosis.
Cost (10%) or lack of healthcare insurance (5%) were also cited as reasons for delaying or not going to see a doctor, dentist, or other healthcare provider.
According to the Economic Policy Institute, since the onset of COVID-19 and subsequent hit to the economy, roughly 6.2 million workers have lost access to health insurance that they previously got through their employer.
Survey respondents also spoke to further obstacles even if insured. These included:
Given the reasons patients had for delaying care, PPAHS asked what information or resources they would like to have before going to see a healthcare provider.
Almost two out of three respondents indicated that they would like to know:
Survey respondents also said:
With the result of this survey, using the Virtual Patient Care platform, PPAHS can more precisely anticipate and address patients’ fears and empower them to seek medical attention when needed.
The existing chat line will continue to connect patients with the nursing team so they can get their questions answered:
In addition, PPAHS plans to add:
With this growing system of information and resources, PPAHS hopes to better serve the community and improve health care outcomes.
Come get your free money! Buyers love rebates, right? It means a discount on the purchase price to the benefit of the customer, right? Well, not always. And it certainly doesn’t occur in the arena of prescription drug rebates.
Most people agree that prescription drugs have made life better. It is also evident that the cost of these medications is simply unreasonable for many Americans. This makes healthcare both unaffordable and inaccessible.
It has long been difficult to discern what is driving high prescription drug costs. This is, in part, because we don’t know what happens behind closed-door negotiations between the middlemen pharmacy benefit managers (PBMs) and drug manufacturers.
It is understood that these parties negotiate rebates related to new therapies. They also bundle older therapies together to protect market share from emerging generic competition. All of this impacts what patients pay, whether in the form of co-pays, deductibles, or out-of-pocket expenses.
This endless circle of negotiations also drives up therapeutic list prices. These are the prices a manufacturer puts on particular products. That’s because when PBMs demand rebates, manufacturers in turn raise list prices to maintain their profit margins.
In fact, research from the Schaeffer Institute at the University of Southern California (USC) shows there is a positive correlation between drug rebates and list prices. They found that on average, every $1 increase in rebates is associated with a $1.17 increase in list prices. Notably, this increase isn’t because of time trends as that was controlled for in the study along with the exclusion of drugs with high Medicaid share.
Patient out-of-pocket spending goes up when there are high list prices. This is because the portion the patient pays is based on the list price. Hence, if there is a high list price then a disproportionate burden is placed on the buyer (patients) in the form of high-cost sharing. This is particularly true when the patient’s out-of-pocket share is coinsurance (a percent of the list price) as opposed to copay (a fixed amount).
Unlike other industries where rebates benefit the buyer at the point-of-sale, patients seem to see no direct benefit from these negotiated drug rebates. All of this begs the questions – if rebates are flowing through the health system, where are they going and how are they being used?
On July 24, the Trump administration signed a new Executive Order specifying that Medicare Part B will not be subject to “retrospective reductions in price that are not applied at the point-of-sale.” They are specifically referring to reductions in price that benefit health plan sponsors, pharmacies, or PBMs instead of patients.
The order also authorizes Health and Human Services (HHS) to create new avenues that would permit “health plan sponsors, pharmacies, and PBMs to apply [negotiated] discounts at the patient’s point-of-sale in order to lower the patient’s out-of-pocket costs…”
This is a positive step forward to changing market dynamics to give patients direct benefit from these discounts and help reduce patient spending. But we must remember that it only impacts a portion of patients who need to access prescription medications.
It does not impact those with private insurance or no insurance. Until this is addressed, secretly negotiated rebates will continue to cost patients rather than save them money.
To better understand how patients are harmed by rebates, let me take you through a hypothetical case.
Patient Jane Smith is on Medicare. She gets her biologic medication from her local pharmacy. She has a chronic disease and must have reliable and affordable access to this therapy.
The medication prescribed by her doctor is designated by her health plan as a Tier 5* drug. It carries a 30% coinsurance. The list price of a 30 day supply of her drug is $333.33, therefore her share of cost is $100/month.
If the correlation described by the Shaeffer Institute holds true and the rebate is now increased by $15, then $17.55 ($15 x 1.17) is added for a new list price of $350.88. Her 30% coinsurance out-of-pocket would then increase to $105.26
There is variation in the way health plans create their formulary tiers. Some have 3 tiers, others 4, 5 or even 6 tiers.
In order to explain what tiers are and how they work, let’s look at BlueCross/Blue Shield’s Medicare Formulary Tiers:
I hope this discussion sheds light on some of the secrecy of the system and the middlemen that are a part of it. And, I hope you now understand how patients are harmed financially by this system.
This is because there is more than a dollar-for-dollar increase in list price when rebates increase. Therefore, the PBMs’ demand for rebates is partially responsible for the increasing list prices that make medications unaffordable for patients across the country.
The Schaffer Institute data further suggests that rebates are part of the problem but also part of the solution. Rebates have a role in increasing drug prices. I believe, if fairly distributed, that they could also have a role in lowering drug prices, potentially lowering patient cost and thereby increasing access to medication.
This begs the question: If PBM’s main claim to business is that they are bringing patient costs down and yet their need for higher rebates is causing the opposite effect, why are they so opposed to reforms that actually may accomplish that goal better than the current system?
Over the past decade, what patients pay for prescription drugs (the sticker price after manufacturer discounts) increased more than three times faster than the rate of inflation. This is according to a study published in the Journal of American Medicine.
This is a huge burden particularly for people living with chronic illnesses. These individuals often require long-term (or lifetime) access to medications.
The drugs they take are often high-priced, complex medications. As a result, these patients have a much higher average drug spend than people without such illnesses. Whenever they fill or refill their prescriptions, they are faced with the burden of high out-of-pocket costs.
As rebates flow through the system and secret negotiations continue, drug prices go up. Some patients may find that they can no longer afford the therapies prescribed by their health care team. This means that these patients are forced to take a chance with their health in the face of financial struggle.
When a patient is forced to abandon their medication because they can’t afford it, they take a chance that their health could deteriorate leading to complications that require expensive interventions.
Surely, what we’ve learned during the COVID-19 pandemic is that we do not want to overwhelm our health systems with easily avoidable scenarios. Making medications affordable and accessible to patients is the ultimate goal. This will lead to an increase in medication adherence. And, it would potentially improve health outcomes and reduce negative outcomes.
If rebates and PBMs are in fact, partially responsible for the increase in list prices and therefore the increase in patient out-of-pocket spending, we need to work towards eliminating or reducing rebates negotiated by PBMs.
We need more transparency and regulation in our healthcare system to make medications more affordable. We must shine a spotlight on how rebates and drug prices are related and negotiated. It will help improve our ability to advocate for policies that benefit patients rather than middlemen.
As a first step, HHS needs to implement the President’s Trump new Executive Order swiftly and make sure patients get their needed and long overdue, drug discounts.
All industries need translators and interpreters who are trained in different languages. Although some items, symbols, and/or actions may be universally understood, you still need to convey subtle meanings and instructions across cultures. It is especially important to overcome language barriers in healthcare. That is why the need for medical translation and interpretation is so critical.
Translation and interpretation activities in the health domain are numerous. They can range from simultaneous or consecutive interpretation, translation of medical files, correspondence between doctors and patients, and much more. This article will provide a complete overview of language translation and interpretation in healthcare. We will attempt to answer the questions:
And we will provide some predictions for the future.
In the language services industry, we differentiate between two concepts related to transferring the meaning from one language to another: interpreting and translation.
These activities are distinct and require different training and skillsets. However, it is common to use the term medical translation and medical interpretation interchangeably. I will try to point out the distinctions as we explore the profession in this article.
Medical translation and interpretation together comprise one of the most sensitive fields within the industry of translation. Unlike some other forms of translation and interpretation, there is zero-tolerance for mistakes in healthcare.
This is because incorrect translation might harm someone’s health or well-being. It could lead to interventions, like surgery or prescription of powerful medications that are associated with a risk of serious complications. Thus, it is clearly an activity that has to be carried out by highly proficient people who exercise a great deal of concern in order to ensure the quality of their work.
The medical translation field has become even more critical with the rise of migration. Large numbers of people move from one country to another without speaking the language. When they require health care, particularly in emergencies, they can be in trouble without interpreters.
For many people who are outside the industry, it may seem surprising that there is such a high demand for language interpretation in medical services. However, statistics show that it’s anything but surprising. For example, in the US, more than 45 million people don’t speak English as their primary language. And, an additional 21 million said that they don’t speak English “very well”.
Along similar lines, until the onset of the COVID-19 pandemic, international tourism was increasing every year. Again, this can lead to people becoming stranded in emergency rooms where they cannot speak the language. Again, this is where medical interpreters come in.
Another opportunity for increased demand in healthcare interpreting is medical tourism. This is an industry that has been on the rise with the expansion of international flight connections and globalization in general.
Medical tourism occurs when people from countries, like the United States with a high costs of healthcare choose to get services in countries where healthcare is high quality, but much cheaper. They often combine it with a vacation.
It is most often done in the fields of cosmetic surgery and dentistry. However, you can now find overseas opportunities to receive a broad range of services, including joint replacements, organ transplantation, and cardiovascular surgery, amongst others.
Naturally, medical tourism’s only issue is the language and cultural gap. This is why many organizations who are dealing with these types of medical services often have language interpreters on call.
According to experts, both medical tourism and telemedicine will increase the demand for interpreting in healthcare services in the near future.
In general, medical translation (encompassing translation and interpretation) is defined as any process of translation that serves healthcare professionals to provide the necessary treatment for patients who speak (or read) another language.
As you are aware, it’s incredibly important that medical professionals are able to communicate with their patients effectively. As I have mentioned that’s not the case, the entire care and treatment process is endangered. Medical interpreting and translation, therefore, primarily deal with these tasks:
When you need any type of medical translation, you should contact experts who are experienced in that particular field. Don’t contact just any translation agency or company – it’s important that the company you’re working with has had previous experience with these types of documents because they have special terminology.
When you’re looking for language services, you need to specify whether you’re looking for interpreting or translation. If you want someone to be in the hospital or at a doctor’s appointment with your family member, look for interpreting services.
If you want to get a medical document, lab test results, or any other written document translated to another language, you’re looking for a translation.
The benefits of interpreting include an opportunity to have a private, intimate conversation with a doctor and to ask questions as they pop up into your mind. It’s also much faster than translation because it has to be done in real-time. The drawback is that there is more room for error as the interpreter has to react quickly and sometimes under pressure.
Translation, on the other hand, is done at a much slower pace. As a result, the translator has the opportunity to step back and take the time needed to decrease the chances of error. However, this may not be applicable in a medical setting because information usually has to be processed as soon as possible.
Just imagine a regular visit to the doctor and being unable to explain what the issue is. Simply put, healthcare heavily relies on the patient’s subjective and objective description of what they are experiencing. Further, care and treatment depend on the fact that patients understand, trust, and listen to doctors’ instructions. In fact, non-native English speakers in the US often report that they are unsatisfied with the medical care they receive and they risk medical errors more than native speakers.
Unfortunately, the vast majority of healthcare organizations do not provide sufficient interpreting services. Usually, people who help non-native speakers are found “randomly.” They are family members or friends who speak both languages, not trained interpreters.
There are many problems with involving family members in interpretation including violating the patient’s privacy, failure to fully translate what the patient said because of embarrassment on the part of the patient or the family member. Sometimes there is a failure to fully understand the question or the answer.
Unfortunately, in many healthcare settings, patients have to rely on family members or secure healthcare interpreting services on their own. Sometimes the healthcare organization will help find the interpreter but the patient will be charged for the extra expense. Sometimes, the patient has to find a language professional on their own and pay out of pocket.
Another increasingly used language service is hiring telephone interpreters in a medical setting. In recent years, many big translation and interpreting companies have started expanding their offer portfolio to cover this service as well.
If you’re considering hiring a telephone interpreter in a healthcare setting, make sure they are certified medical interpreters. The issue with tele-interpreters is that many people and organizations around the world offer this service with varying quality. Unfortunately, it may be hard to differentiate between expert interpreters and amateurs.
If you’re sure you have access and cooperation set up with a certified medical telephone interpreter, that’s a good solution. If you’re not sure, it’s better to opt for some other interpreting options.
The greatest issue with language interpretation in healthcare is that organizations don’t contract with regular interpreters because of the financial burden these services may impose.
Among all translation niches and fields, medical is one of the most expensive ones. Also, simultaneous interpretation is notably more expensive than a written translation.
Affordable services that can help you with medical translations are widely available. You can search the internet for medical interpretation and translation services to see what kinds of prices are being charged.
You will find that the pricing may differ wildly from one organization to the next. For example, some healthcare clinics offer free interpreting services for patients who don’t speak the language. Others will charge it as an additional service along with your medical bill.
Remember, the benefits far outweigh the costs when you decide to hire a professional medical interpreter compared to a non-trained professional.
If you’re a healthcare professional who is communicating with a non-native speaker for the first time, a patient who doesn’t speak a foreign language or an intermediary, here are some of the basic tips to keep in mind during the interpreting process:
It sounds obvious, but it would surprise you how many times people forget about this. Present all the people who are taking part in the conversation: patient, patient’s partner, parents, and so forth.
Keep in mind that someone will be translating everything you say. Slow down the tempo and speak clearly. This is especially important if you are a naturally fast speaker.
When an interpreter is present, many people feel like they should speak to them instead of the doctor/patient. You should talk directly to the doctor/patient instead.
Don’t combine dozens of sentences and questions and wait for the interpreter to make sense of all that. Take frequent breaks from speaking to give the interpreter enough time to present what you just said.
When you have an appointment with an interpreter, it will last at least twice as much as a “regular” appointment. Make sure you take that into consideration when you schedule these types of appointments.
For many people, this is a new situation that takes some getting used to. Namely, a visit to the doctor is, for most people, a private and intimate process. It involves communication about your personal issues with a person you trust.
When an interpreter enters this equation, the social dynamics of the doctor-patient conversation can become a little awkward. Nevertheless, it’s a prerequisite for good understanding and to ensure that a patient receives proper care.
Medical interpretation is sensitive. It is best when it is carried out by professionals. If a healthcare organization doesn’t have its own interpreter (which it probably doesn’t), you can hire someone to help you. Make sure you hire someone with experience in healthcare particularly because mistakes really can be costly.
Avoid getting interpreting services from amateurs and non-trained persons if at all possible. As you probably know, even the tiniest bit of information that’s exchanged in doctor-patient communication is important. Omitting something or adding a fact that’s not there can seriously harm care and treatment. To avoid this, I recommend you work with professionals.
Time constraints make it difficult for the average physician to think about their patients holistically. After all, they often see a different patient every 20 minutes.
Within this tight timeframe, the physician must consider and provide recommendations that account for the unique needs of the patient. That includes their health history and circumstances in their life that may impact their health.
On top of that, during each appointment, physicians are responsible not only for delivering high-quality care but also for fostering a relationship with each and every patient. This can be difficult given the heavy workloads most physicians already bear.
However, taking the time to form a relationship with each patient is absolutely critical to patients’ health and wellbeing. This is especially true for women, who face systemic and disproportionate barriers to accessing quality healthcare.
Medical training teaches us that every patient is different. However, we are not necessarily taught how to account for these differences. Nor do we learn how to address the challenges some face when trying to access costly treatments or medicines.
Policy, regulatory or managed care limitations are often out of our control, such as insurance not covering the birth control option the patient wants. Changes to federal funding could make this even worse, directly impacting a physician’s ability to offer the best options to women with lower incomes.
The “red tape” and politics related to these issues can drive physicians to avoid discussing them with patients. However, physicians cannot ignore these very real barriers many women face.
Treating the whole patient is especially critical in women’s health where many physicians find themselves inadvertently providing “one-stop-shop” care. While women ideally would go to a variety of physicians to take care of all their concerns, the reality is that many turn to one physician for most of their needs.
This doesn’t mean that physicians should work outside of their primary specialty. But they should be prepared to listen to all concerns presented by patients and consider a holistic approach for their care. No matter the physician specialty, this can include asking about sexual/reproductive health, mental and physical health.
Physicians can use this information to refer a patient to the proper specialists and to provide her with relevant information and resources. It also gives the physician a better idea of the patient as a whole, which makes it easier to provide medical advice and treatment tailored uniquely to her.
When it comes to discussing reproductive health, specifically, we must be mindful of the lifetime of the stigma some women have faced when talking about their reproductive health and sexual history. It is not uncommon for women to hide certain symptoms of reproductive health problems. For example, they may be uncomfortable discussing their sexual health and menstrual cycles.
Women may also be afraid to raise concerns with their physician for fear of asking a “dumb question.” This fear can prevent women from having quality conversations with their doctors. It can also lead many to leave the physician’s office with unasked questions and a lack of information about the best treatment options for them.
Physicians can play a pivotal role in overcoming this issue by educating and empowering their patients. First, we can give patients the opportunity to ask about these topics. We can open safe dialogs about their experiences with the following topics:
By prompting our patients and asking in-depth questions, we can kickstart a good conversation that empowers the woman to speak openly about her health needs.
We also need to ensure that patients are aware of all their options. You would be surprised at how few women I speak with (or even doctors) know that there are 18 FDA-approved birth control methods. The best available treatments for that individual patient may not be considered if a woman or her physician are not educated on the options.
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Far too often, I hear horror stories about women who had issues with their contraception. Too often, these negative experiences cause women to stop using contraception altogether. Only later do they learn that there was a better option that was more suited for them.
I have also met countless women who were prescribed a contraceptive that was unaffordable because they didn’t have insurance for whatever reason. Both cost and insurance play a huge role in a woman’s ability to obtain medicines. We must keep this in mind in the examination room when discussing recommendations with patients.
While women are all too familiar with the obstacles they face, their physicians may not be. It can be easy for us to not look at the broader picture when we are speaking with our patients. Instead, we should be looking closely and reading between the lines.
We should ask ourselves the following questions:
Physicians can take this opportunity to put themselves in the patient’s shoes and see it from their perspective. We can try to understand why they are scared. And what we can do to make them feel more comfortable.
Physicians can play a powerful role in combating the systemic challenges women face in accessing healthcare. Once physicians become more aware of the different issues faced by patients, we can then arm them with the right information.
Simply asking a question that a patient is afraid to bring up herself can make a huge impact. It can spark a conversation. When we create an open and honest dialogue with our patients, we empower them to ask more questions and educate themselves.
Patients who are informed can achieve better health outcomes, including those that are related to reproductive health.
Understanding nuances such as stigma, affordability and other challenges women face in accessing healthcare enables physicians to provide better, more personalized care.
We may not be able to solve every problem, but we can push ourselves to understand the whole patient and guide them toward the best treatment options.
Only with a concerted effort can we make the exam room a safe, educational and empowering space that allows every woman to have more productive and personal conversations about her health.
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This post was first published on August 26, 2019. It was reviewed and updated on March 10, 2020.
In today’s current state of health care in the U.S., the payer-provider relationship is like two sides of the same coin. And, the dollars and cents that make up that coin have come under greater scrutiny amid calls for increased health care transparency.
In June 2019, President Donald Trump issued an executive order that directed the U.S. Department of Health and Human Services to increase price and quality transparency in health care. Creating greater transparency in pricing allows providers to compete and leads to lower prices for patients. But that effort can only be achieved through fostering improved relationships between payers and providers, and understanding what such a relationship would yield.
There are many critical areas in healthcare that need to be addressed through increased transparency. Among these are issues related to billing, treatment recommendations, and variations in care. Doing so would create greater understanding between those who provide care and the payers who monitor and manage patients’ care coverage.
Payers would certainly benefit from improved understanding and transparency about treatment progression and anticipated outcomes. Such information would help them efficiently manage claims throughout their lifecycle. I believe that this would help to accomplish greater processing, faster approvals, and enable patients to receive care faster.
Bringing together payers and providers help to expand care delivery models for its members, especially with complex and chronic conditions. As more organizations look to unite these two entities it creates a more aligned network of players where the focus is on delivering the most effective form of care and less centered on fee-for-service medicine.
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Using transparency in costs and case management efforts, payers and providers can strengthen their relationship in a union of better understanding and commitment to enhance the delivery of care.
For payers, greater clarity and insight of provider treatment plans, recommendations on exams, and patient history can help to improve processing times and reduce case delays. Conversely, payers can also educate providers on the claim processing cycle, areas where certain therapies may be more cost-effective, and plan options unique to a patient’s coverage.
While a single-payer system or “Medicare for all” continues to be floated as a potential option for the challenges in America’s health care system, there can be many advantages achieved through fostering stronger relationships between payer and provider in the current state. Payers act as an advocate for the insurance company as well as the patient who may face additional costs for treatments or medications that may not be covered. By creating a greater connection between the provider and payer gatekeepers, patients can reap the benefits of coordinated care that also helps to reduce the total cost of care.
Providers and payers stand to gain further insight through increased patient history, including demographics, family history, and social-economic factors that could be contributing to their current health state. With both providers and payers working collectively to understand elements of individuality about a patient, it provides greater opportunity to deliver better care, while also creating value for patients in their health plan and leads to increased treatment adherence.
Patient satisfaction and effective patient-provider communication are key to improve engagement for all parties. I’ve seen patients receive faster treatments and enrollment in medical studies and teachable moments for physicians as a result of increased collaboration between patients and providers.
When it comes to creating patient satisfaction, payers must also gain a greater understanding of patient choice and external factors such as cultural or personal needs. This also includes compassionate and respectful handling of patients and their families.
By establishing open communication channels between patient and provider, the two critical entities in the US health care system can help keep patients engaged in their treatment and monitor outcomes. Working together from all sides is how we will begin to shift to value-based care, strengthening patients’ commitment to improving their well-being.
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Patient engagement doesn’t lie just with the provider, health insurers also have a unique opportunity to boost patient engagement. It’s essential to think about the delivery of care from both the patient and their family’s point of view. In many cases, health systems have begun to develop patient advisory panels to help foster these types of cross-functional communications, enabling a more comprehensive system of patient touchpoints.
This begins by ensuring patients have adequate information about their diagnosis, how to care for themselves, and insightful information on improving their health. For more serious issues, that level of information may extend to communication with a patient’s primary care provider or specialist, or more long-term care needs. By involving a payer in this communication, they serve as an additional resource to manage patient progress and ensure the patient is moving toward improved health.
Through proper patient education, increasingly delivered in digital formats via email or video, physicians start the handoff of the process of empowering patients in their health. When that empowerment extends to payers and other points in the health care system, patients gain a supportive network to take action and begin to see positivity in their situation. Adding in more personalized care with respect to individual concerns and family situations, we can remove barriers to doubt and empower patients.
This effort requires joint commitment, with education for staff on how to engage patients. It requires maintaining that communication loop with feedback from the patient and family about their experience, to continually improve gaps in service.
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Greater transparency into cost-effective treatments and programs also aims to help health plans identify providers who routinely deliver the highest quality care while keeping costs low. With a greater move toward a value-based care system, all parties can benefit from improved health knowledge on what typical treatments yield the greatest outcomes, the most cost-effective measures, and treatment options within case duration.
To establish greater clarity for payers, we need to ensure that they have the latest tools that offer transparency into the clinical process. Uniting payers and providers into one digital environment can connect patient health data with provider networks for expedited review and processing. For example, the company I work for, StayWell, launched a new application that integrates directly into care management systems that allow payers to easily connect into provider systems for this purpose.
As pressure from the federal government to improve price transparency increases, supporting stronger relationships between provider and payer will lead to improved care across the board. When a provider better understands patients’ coverage options and costs, they can work with payers as a care team to ensure patients receive proper treatment that won’t bankrupt them. As a result, providers see less push back and denials, leading to greater productivity. This simpatico relationship leads to improved patient satisfaction and treatment adherence. It’s a critical next step in the evolution of the nation’s health care system.
Financial disclosure: The author is the Chief Medical Officer of Stay Well mentioned in the post. The company could benefit from this mention. TDWI did not receive payment to publish this article. Rather, it was published because we think it has information that is valuable for our readers.
In 2010, I went to Nanjing, China for stem cell therapy (SCT). I have absolutely no regrets.
The therapy was to treat a debilitating, progressive neuro-muscular disorder I’d had since childhood. The condition had progressed to the point where my walking was unsteady and my swallowing was no longer functioning properly.
Two years prior, I had to endure the emotional and physical ordeal of having a feeding tube inserted into my stomach. At the time I was completing my Ph.D. in Political Science at the University of Pennsylvania. I detail my experience here. [Editor’s note: I highly recommend that you read Rahman’s extraordinary essay. It provides valuable background for this OP-ED.]
Although neurologists told me there was nothing I could do but manage my condition, I was determined to find a cure. I began researching various emerging medical modalities and ran across SCT.
After studying the academic literature, I emailed some of the papers’ authors for their opinions on my case. I was told that there was no way to determine whether SCT would help me any, if at all. However, there was absolutely nothing in the literature that indicated the therapy could injure me in any way.
Thus, after serious study and earnest deliberation, I decided to try SCT. I knew the therapy would be expensive. And I knew it might not help me. I accepted those risks.
Conventional medicine had absolutely no answers for me. I decided that I owed it to myself to do whatever I could to save, or at the very least improve, my own life.
I researched several options and ultimately decided on a company that would treat me at a hospital in Nanjing, China. The representative from the company offering the therapy answered all of my questions thoroughly and professionally.
After all of the particulars were clarified, the booking was made. Soon afterward, I wired the funds to the company. I had absolutely no fear of traveling to China and no fear of the therapy itself.
Upon arrival at the Second Affiliated Hospital of Nanjing University, I completed some basic diagnostic tests. After, I was given several injections of umbilical-cord-derived stem cells. They were delivered intramuscularly (IM), intravenously (IV) and intrathecally. A team of neurologists handled my care.
My overall care was exceptional. Everyone, from the Chief Neurologist to the highly attentive nursing staff, translators, and custodians who attempted to teach me a few words in Mandarin contributed to my excellent care experience. Without question, the decision to go to Nanjing was one of the best I have ever made.
I got to enjoy a bit of China and its culture. I also met warm and caring hospital staff as well as fellow patients. And, the therapy helped me greatly.
The improvement “kicked in” approximately three months after I returned to the U.S. The Chief Neurologist advised me that this would be the case. The improvement was dramatic. My overall strength had significantly improved, my motor function had improved and my energy was clearly better.
Related Content: Why It’s So Important to be a Patient Advocate for Your Loved One
Did the therapy cure me? No. And, its effects did diminish over time. However, I knew that with such a rare, aggressive long-standing condition, this could be the case.
If I had to do it again, I wouldn’t hesitate for an instant. I was so pleased with the overall outcome that after completing my Ph.D., I decided to advocate for all Americans to have affordable access to the therapy in the U.S.
I have written a number of online articles and a report entitled “Stem Cell Legislation in New Jersey: A Responsible Approach to the Costs of Disability and Disease.”
Both my research and my personal experience prompted me to consider SCT to be a paradigm shift in medicine and a therapy that everyone should have the chance to try.
I had then, and still have now, exceptionally high hopes that SCT will be embraced as a new, powerful therapy. One that could help people with any number of disabling medical conditions achieve the physical freedom conventional medicine cannot offer them.
Sadly, almost ten years after I went to Nanjing, the current mainstream narrative about SCT in America is one of antagonism and conflict. It is characterized by
Hyper-critical statements from oft-cited scientist/ethicist “experts” reinforce the SCT story as being unruly, chaotic and wild.
The debate has devolved and become politicized. And, many in the scientific and journalistic communities seem to have lost sight of the needs of the patients themselves.
Unlike the umbilical cord therapy I received, the current debate concerns primarily autologous stem cell modalities. These are treatments in which bone marrow or adipose tissue is extracted, then processed, then re-administered to the same person.
Stem cell proponents argue that SCT should be regarded differently than conventional drugs, and FDA regulations are
SCT critics argue, conversely, that the regulations are appropriate and necessary to safeguard safety and efficacy. And, they believe, that the FDA needs to do more to enforce them.
Lost in the minutia and technicalities over policy is the patient perspective. In fact, the patient perspective is often implicitly dismissed, mocked or vilified even by supposedly-objective researchers.
Sadly, government, media, and scientific commentary are often permeated by an undercurrent of condescension, elitism and aristocratic thinking that denies the humanity and autonomy of patients. This makes the SCT picture sterile, clinical and mechanical. The human element – one that can only be provided by the patients – is what brings the issue into proper focus and gives it the depth of color it deserves.
Yes, patients can be desperate. And, in their desperation, they can be exploited by SCT bad actors. However, patients are not nearly as ignorant, infantile and docile as they have been portrayed. They need not be treated so paternalistically by ethicists or regulators.
The perceived flagrance of stem cell clinic operators and the perceived permissive FDA response has sparked the ire of certain recalcitrant, backward-thinking elements within the medical establishment that lodge unsubstantiated critiques of SCT writ large.
From a patient-advocate perspective, these critics seek to maintain a monopoly on knowledge about what’s best for patients. At the same time, they usurp patients’ right and duty to perform their own due diligence and make the health decisions that they believe are best for them.
There is no question. There are important concerns over stem SCT that should be raised including,
However, any robust debate must include the perspective of those most immediately affected.
Much to the dismay of SCT’s most ardent critics, the people’s voice has now gained predominance, as exemplified by the proliferation of SCT clinics. This proliferation has occurred despite the fact that the products and therapies offered by these clinics have not gone through the FDA clinical trial process.
The apparent ubiquity of physical disability and chronic illness amongst Americans from every geographic location, every socioeconomic class, every gender, every race, and every political ideology has fueled the growing interest in SCT.
The market has responded. And the government must respond as well. We all must recognize that the demand for SCT is urgent.
I believe that any broad crackdown on clinics that might occur will simply not be feasible or ethical. Working with clinics rather than against them is the optimal way forward.
Regenerative medicine generally, and SCT specifically, has reached its tipping point among the American people. Paradigm shifts are messy, disruptive and often turbulent enterprises.
Stem cell therapy is no different. However, amidst the turbulence, we must remember to put the needs of the patient first.
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The information in this article should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of The Doctor Weighs In.
A shift toward patient-centric healthcare is a natural evolution as consumers gain greater access to information and take on bigger roles in managing care decisions and dollars. Consumers today are more compelled than ever to serve as active participants in their healthcare, demanding from us more personalized experiences and better outcomes.
Patient-centric, value-based care has become an inevitable solution. It enables patients, providers, and payers to engage in meaningful ways, and empowers us by providing clearly defined pathways to well-established, evidence-based treatments with proven effectiveness.
A patient-centric model offers benefits across the board, cutting the growing costs and complexities of health care, and connecting stakeholders so that we can better focus on our shared objective: successful outcomes that positively impact patient health.
Here’s a closer look at the benefits we stand to gain by shifting to evidence-based, patient-centric care, and how technology can help:
In the United States, medical care spending has grown at a rate faster than the gross domestic product, yet it is estimated that more than $900 billion is wasted each year – much of it on unnecessary or ineffective treatments.
The skyrocketing cost of health care is not surprising considering that the average annual cost of a drug to treat cancer was $150,000 in 2017. Today, there is a flood of new drugs, including more than 1,100 new cancer therapies—many immunologically or biologically targeted—imminent or pending FDA approval. They are expected to be more expensive than their predecessors. According to a study released in JAMA, the rising prices are industry-wide, leading to patients paying more for health care than ever before.
Treatment plans based on evidence-based standards and therapies can help reduce costs by expediently guiding us to the right treatment decisions, eliminating variability in care, and ensuring that the care is accessible to all who need it. It will also align evidence-based care with payers’ plans to assure payers that their members are receiving the best possible care, and to facilitate authorization and reimbursement.
Our field’s ever-changing landscape, the volume of new drugs at our disposal and the escalating complexity of care are factors contributing to ineffective treatments and wasted spending. The science of medicine has advanced far beyond what an individual practitioner can process, track and know without advanced systems support.
As genomic, proteomic, and metabolomic mechanisms of disease are better understood, treatment options will continue to increase, adding to the complexity of care decisions, especially for physicians dealing with unusual diseases or presentations. Modalities of care options are growing too, offering new surgical techniques, radiation modalities and novel devices such as tumor-treatment fields for care consideration. It is expected that there will be more than 10,000 decision data points for physicians to consider when prescribing treatment, per patient, by 2020.
Patient-centric, evidence-based care will consider all factors and provide guidelines and up-to-date, evidence-based standards and clinical trials to enable us to make the most informed, appropriate decision for each patient.
Selecting an evidence-based treatment that offers the best outcome at a more effective cost than a competing therapy creates value-based care that benefits all parties:
The era of personalized medicine is upon us with consumer-facing genetic and pharmacogenomic tests available at the neighborhood drug store. Patients understand the potential value of these tests to affect the treatment plans they receive and expect this data to be analyzed as part of a decision-making process.
Payers must adopt a flexible position to intake this data through positive coverage determinations, or risk using outdated actuarial risk tables to estimate costs. For example, if a genomic test can avoid the use of a potentially toxic or ineffective medication for a particular individual that would otherwise be considered evidence-based and effective in the larger population, likely covered by existing medical policy, then this test would be beneficial. This means that payers must look beyond population-based policy decisions and adopt a true patient-centric vision.
There is no denying the benefits of delivering the best possible care at the best possible cost, but it’s easier said than done. Physicians need technology for the support it can provide.
Software systems support can be leveraged to harness data to reveal patient-centric solutions with evidence-based outcomes—helping us avoid expensive trial and error treatments— and better align our processes with payers so that patients get the best possible, pre-authorized treatment as quickly as possible.
Effective systems support will also:
Related content: Patients Need Personalized, Not Generic Health Advice
Technology has driven the evolution of patient-centric cancer care by demanding transparency and providing access to information that enables patients, providers, and payers to become true partners in healthcare decisions. The partnership forged by patient-centric care models will continue to transform care by reducing costs and complexities as well as improving outcomes.
To learn more about the inevitable shift to a patient-centric, value-based approach to health care, and how a solution like NantHealth’s Eviti® Connect can help guide decisions to get each patient the best possible treatment— pre-authorized and accepted by his or her health plan— as quickly as possible, listen to NantHealth’s webinar presentation The Evolution of Value-Based Care: A Shift to Patient-Centric Care.
Seeing a loved one suffer from a medical condition is so very difficult. This is especially true if there isn’t much in your control that you can do to alleviate their pain. It is important to remember, however, that although you may not be able to cure their disease or take away their pain, you can become their patient advocate.
Depending on the condition of the patient, many times they are solely dependent on the care of others. This is where your job as a patient advocate comes in to play.
Although the medical advancements and healthcare technology of today continues to boggle the human mind in its sheer brilliance and complexity, they still do not and cannot take the place of a human helper.
In the world of health insurance, there are times when you will have to seriously advocate for the patient to receive the proper treatment and tests. Unfortunately, there are times when the insurance company is unwilling to pay for a particular test which can be crucial for the patients care.
As an advocate, you will need to use your voice to fight for coverage of the procedure or test that can sometimes spell the difference between recovery, or not.
You know your loved one best. By being present throughout their medical treatments, whether it is in a hospital setting or doctor visits, you can ensure that they feeling comfortable at all times. You can pick up on their mood and feelings based on facial expressions and nuanced behaviors that only someone who knows them well can detect. The nurses’ care, but they are busy and cannot put all their focus on one patient. You are there just for your loved one and are exclusively available to tend to their needs and concerns.
Especially if your loved one is suffering from dementia, having a familiar face present will help keep them feeling safe and secure. Many times those in a confused state or those in pain have a hard time expressing their needs and concerns. Only someone close with them can understand what may be bothering them and see to it that their issue is addressed properly.
When the family of the patient is allied with the medical care team, the patient’s care plan can be executed more easily. At the end of the day, being on the same page regarding the care plan as well as on board with all that you may need to do can be critically important to the patient’s overall care.
In addition, being involved in all aspects of your loved one’s medical care allows you to see the course of treatment and stay on top of coordinating all their care. There are times when mistakes can be detected and averted as a result of your bird’s-eye view of the treatment plan.
Related Content: OPINION: Stem Cell Therapy – How I Became a Patient Advocate
Showing your support and genuine care for the well-being and recovery of your loved one will help her get better quicker. Studies show that those who have a more positive outlook on life, in general, have more positive outcomes when struck by a serious disease.
Your positive, comforting presence can help put your loved one in a better frame of mind. This will, in turn, may help them have a more positive attitude. It will also give them a greater chance of a positive outcome in their recovery. Try to keep your loved one upbeat. Provide them with the encouragement and hope that everything will be okay.
It is truly amazing how the mind possesses tremendous powers that it can actually change the physical state of the body. Dr. John E. Sarno wrote several books on the topic of healing back pain through your mind, and his theory can be applied to many conditions. This an enormously powerful tool that if utilized properly will make the situation more pleasant for all.
When the medical team sees a family that is actively involved in the health care of their patient, they, in turn, do their job with greater dedication.
Show your appreciation to the nurses, doctors or health aides. It will go a long way. Medical professionals work tirelessly on behalf of their patients. It is often an exhausting and thankless job.
Show your thanks via a box of chocolate or some other small gift. This can encourage them to look out for your loved one and provide better care.
In general, it is against policy for nurses and doctors to accept large or expensive gifts. However, small gestures of appreciation are usually ok and much appreciated!
Be there for your loved one, advocate for them, and spend time with them as it’s crucial for their recovery. And if you were in their situation you would want them to be there for you.
Fitbit loses 5% of users within a week of purchase and 12.5% within a month. Fitbit hasn’t overcome the human tendency to quit lifestyle changes despite having a revolutionary product that yields long-term health improvements.
But what if I told you that Fitbit has, comparably, an amazing retention rate?
Virtual care systems, such as telemedicine, have a patient retention challenge as well. Remote care – much like remote work – requires motivation effective enough to overcome our tendency to quit.
The tendency to quit is strong and goes across our health care experience. For example, the percent of people still taking their statin medications 90 days after getting a prescription is only around 60%.
This challenge of people quitting is amplified within B2B health tools, like Conversa, because we must keep multiple parties engaged. Doctors, administrators, and patients are just some of the stakeholders B2B tech must delight.
From opening a daily meditation app to logging into different healthcare sites, the technology is dependent on the patient’s action (or inaction). When the patient is feeling good, there’s more of a drop-off.
In my observations of chatbots, retention is really driven by two things:
If a patient answers yes to both of those, retention will be higher.
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Here are a few ways we observe virtual care companies, including Conversa, working to improve patient engagement:
Not only do they use language strategically but they ask questions that are easy to answer.
If you think building a chatbot for health care is about technology, think again. At the root of these interactions is language. There’s a conversation that is going to decide what happens next for the patient.
In order to have a wider view of how we hold dialogues, we hired writers with unique backgrounds. Our director of content strategy is a Nickelodeon alum who ensures the language we use is approachable and empathetic.
We work with psychologists to make sure that our words support patients’ self-determination.
Some companies are starting to shift their focus to the quality and effectiveness of the content.
One way to approach this is to align what the bot says with a sense of patient autonomy. The bot speaks to the user in a way that acknowledges their competency in managing their care.
Relatability is another important ingredient. It’s not surprising that patients open up to their doctors more if they feel understood. These are all tenets of Self Determination Theory, or SDT, which we embrace fully at Conversa.
The other hurdle is that bots need to compete within an increasingly bombarded attention span. They need to make sure that every interaction is helpful. It also must be brief – 150 words or less.
To solve that, we ask for feedback after every interaction, and we are short and sweet about it: Was this interaction helpful?
As we refine the bots based on this real-time data, we’ve seen results. 97% of Conversa chat sessions are rated as helpful. This is true across regions and uses cases as different as lifestyle coaching, post-discharge after a hospital, before or after surgery, or in the management of a chronic condition.
The more advanced virtual care technology becomes, the easier it is to lower barriers to adoption and retention. It lets us “meet people where they are.”
We find it essential to engage the caregiver when the patient is “digitally unable.” That effort helps push our Medicare participation rates to over 50%.
This is crucial to the “am I getting value?” aspect of lasting tech. It puts caregivers in direct contact with their loved one’s health.
Another tactic is to offer easy access to a vetted library of interactions. This also goes hand-in-hand with self-determination theory.
Patients exploring their condition on Google may find some reliable but also blatantly false information. We provide the patient with the correct information directly.
AI and data analytics have made more refined personalization possible at scale. However, it is also important to personalize the right way. (Hint: starting an email with the person’s first name is not enough!).
This can be tough. There are a ton of data points in a patient profile, including:
To keep patients on track with the platform, the bot needs to adjust each dialogue, every step of the way. And, it needs to be done at exactly the right time.
Conversa utilizes a variety of techniques to accomplish this:
We use a taxonomy-driven profiling system to look in real time at patterns of clinical and non-clinical patient profile characteristics. This allows us to deliver exactly the right chat experience.
Every patient interacting with the Conversa chatbot gets a different dialogue. And, they never have the same chat twice.
Not only is this tailored to their specific issues, but it keeps the conversation fresh. Bots can do this particularly well.
When the bots will initiate a chat, is a very influential aspect of sustained engagement. It requires personalized timing.
Take Facebook, for example. Desperate to get their users back, people criticized them for innocuous push alerts, further repelling them from the platform.
The frequency of the chats needs to be calibrated to the patient’s own sense of urgency. If a patient has just been discharged for heart failure, we are going to check in on them more often. If they don’t respond, we remind them.
We have seen a 60% retention rate in our lifestyle cases–those who are losing weight or managing diabetes–after nine months of utilizing the chats in employer settings. We feel a good portion of that success has to do with our personalization approach.
Another strategy we use is to anticipate everything that the person we’re writing for may encounter at different points in their journey and in different circumstances.
For example, we know what someone who just undergone hip replacement surgery will have to deal with. So, we offer specific pre-surgery advice: buy a grabber, since you won’t be able to reach for things from the bed.
For head and neck cancer patients preparing for radiation therapy, we advise them that they will need their fillings removed.
We let them know that they may lose their sense of taste, temporarily or permanently. We also educate them ahead of time that swelling in one leg is not something to ignore.
This timely, personalized, anticipatory advice is what keeps them engaged. And, it reduces complications.
Patient trust is becoming a bigger area of focus when it comes to enhancing retention. Users need to be able to trust the chatbot the way they trust their doctors.
We see the platform as an extension of their (human) care team. We’ve seen patients express thanks for the bot interaction the same way they would thank their doctor. And it’s certainly not because the patient is confusing the two.
Integration with other health tools is important. Virtual care companies realize that if they can easily weave their functionalities with tools like Fitbits and Apple watches, the chances of keeping that patient engaged are higher.
Integration with the provider’s workflow is even more challenging and even more important. By integrating these technologies more seamlessly with the systems of care, they can be a more effective extension of that care.
To be successful in achieving meaningful patient and provider retention, virtual care and chatbot companies cannot just throw new technology at the same old problems.
They have to understand the features that really support patient retention. And, they have to focus on them with precision.
Patient centricity was the focus of the 15th annual eyeforpharma Patient Summit USA held in Philadelphia on October 23-24, 2018. The conference sought to shed light on the importance of patient insights for businesses and design values for companies.
At the conference, Accenture and eyeforpharma both agreed that the health care system is making some progress in this regard. However, according to the National Health Council, there are still challenges that remain to make patient centricity a necessity rather than a contingency.
This conference featured numerous panels and presentations that addressed the topic of patient centricity from different angles. Several common themes emerged.
Patient centricity is officially defined as the process of designing a service or solution around the patient (1). The push for increased patient engagement within healthcare aligns with the term “patient centricity.”
The voice of the patient is particularly imperative within the autoimmune community. This is exacerbated by the fact that many people, even those who know autoimmune patients, are unaware of the growing economic and public health burden that this epidemic of invisible diseases is loading onto the healthcare system.*
Related Content: 3 Compelling Reasons to Shift to Patient-Centric Care
The first speaker was Sarah Krug, Founder of Health Collaboratory and CEO of Cancer101 who captured my attention by summarizing our love/hate relationship with technology.
We live in an age of instant global connectivity. Yet, we are feeling more alone and triggering an epidemic of loneliness.” – Sarah Krug
What does this mean exactly?
While technology has significantly advanced humankind’s potential to connect and explore, an opposing view has also arisen, suggesting that technology can produce more individual isolation by discouraging physical social interactions.
Nowadays, technology has incorporated itself in nearly all facets of contemporary society, including the healthcare industry, through the rise of digital tools and apps for patients, practitioners, and businesses. My thoughts on whether or not autoimmune patients are ready for digital tools resonated with Krug’s story of the cancer toolkit.
Cancer101 has a well-regarded paper toolkit that patients receive when they are newly diagnosed. The toolkit applies to 23 cancer types and ~ 100,000 toolkits are distributed per year. Yet, Cancer101 receives 300,000 requests for these toolkits per year. A proposed solution to meet this demand was to digitize the toolkit. Yet, when they asked patients and practitioners if they wanted a digital toolkit, 95% said “No”.
In this situation, switching from paper to digital was not the solution that the patients wanted.
Instead, Cancer101 redesigned the planner to be a digital and tangible hybrid. They brought on illustrators to help track the patient’s journey and applied technology that let them push content relevant to the specific patient. Overall, this created a more personalized educational journey. This approach resonates with my mission to integrate the best of conventional, functional, and digital medicine for autoimmune patients.
There are 318,000 health apps in the marketplace. Yet, the average usage retention of any one of these health apps is two weeks.
There is no shortage of innovation and digital tools available for patients. There does, however, seem to be a shortage of patient insight on whether or not such digital tools and technology are necessary or helpful to patients in the first place.
With this in mind, Krug created a Patient Shark Tank– a tribe of 16,000 patients across disease states that provide perspectives on digital health innovations. This cohort of patients provides valuable insight that can allow organizations to address various shortcomings, opportunities, and gaps of which they would otherwise not be aware.
Patient centricity is also necessary during pharmaceutical drug development, from early-stage clinical trials up to the very last step of printing a label and sticking it onto the pill bottle. Laurie Myers, Director of Global Health Literacy at Merck, strongly emphasized keeping patients in mind till the very end of the drug development process through her discussion on health literacy.
Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”(2)
“Poor health literacy is a stronger predictor of a person’s health than age, income, employment status, education and race.” —Laurie Myers
One of the first steps Merck took for improving health literacy was to develop a new standard for developing patient labels for new molecules. They have also focused on creating better packaging that helps patients better understand how to take their medicine. They also modified their language to improve comprehension and build patient trust. I see Merck’s “health literacy” following the same trend as Silicon Valley startups that use user-centric design to create simple-to-use products for users and patients alike.
Though there were numerous notable speakers who discussed various ways patient centricity can be applied to the world of healthcare, implementation of these approaches is still in its infancy. The real issue that lies ahead is crossing the patient engagement adoption chasm.
Mark Boutin from the National Health Council discussed this disconnect in detail, specifically for chronic disease patients. From previous research, he said, we know that “shared decision making for complex chronic disease patients can improve outcomes, reduce costs, and make people happier. Yet, it is not highly used.”
But times are changing. Previously, only a third of the population had a chronic disease. Now, ⅔ of the population has a chronic disease and the “need to develop qualitative and quantitative science to support decision-making to segment populations and deliver care for these segmented populations” is more necessary now than ever before.
However, these decision-making processes cannot be solely based on the opinions of doctors, academics, and researchers. Such judgments have to reflect the values of patients in terms of their feelings, functionality, and quality of life.
Over 75% of all device submissions to the FDA now have patient input data. A growing number of drug submissions do as well. More importantly, the FDA strongly encourages the submission of patient input data in future drug and device submissions.
The National Health Council is determined to ensure that progress in patient engagement is maintained by promoting this cultural shift, communicating good practices and creating consistency and predictability around the use of patient input data in regulatory and coverage determinations.
 Fimínska, Zuzanna. “Patient Centricity: What Is It – and Why Aren’t We There Yet?” What’s TRUST Got to Do with It? | | Eyeforpharma, Eyeforpharma, 10 Dec. 2014
*You can find more articles on autoimmune disease by Dr. Feldman on her TDWI author page. Here is a link to her presentations on patient centricity and the autoimmune community at the 2014 Stanford Medicine X.
Just as many physician practices are beginning to gain experience with value-based payment models, health policy discussions are already turning to what many are calling the next step in the evolution of value-based care: social determinants of health (SDoH). The conversation focuses on what role SDoH play in patient health and how clinicians can help address SDoH disparities.
SDoH are the conditions in the places where people are born, grow, live, learn, work, play, and age that affect health risks and outcomes. On a practical level, conversations about SDoH normally are about issues such as food security, housing stability, interpersonal violence (e.g., domestic violence, child abuse), transportation, and utilities (e.g., heat, water, electricity). More broadly, SDoH also can include issues such as economic security, personal safety, and the environment (e.g., air pollution, drinking water quality).
Social Determinants of Health have a profound impact on health outcomes. According to one study, 20% of health outcomes are tied to Social Determinants of Health, specifically (5% related to the physical environment and 15% related to social circumstances. An additional 40 to 50% are driven by behaviors that affect health. In my opinion, many of these detrimental behaviors are most likely influenced by the individual’s social determinants (e.g., poor diet because they live in a food desert, lack of exercise because they work two jobs or live in a dangerous neighborhood). The remaining 30% of health outcomes are driven by genetic factors.
Given the large role that SDoH play in driving health outcomes, it makes sense that efforts to improve the quality of patient health and reduce health care costs need to address these issues.
Some commercial payers and larger health systems have already begun initiatives to address SDoH disparities, and these efforts have been accelerating. For example, Geisinger Health System operates a “Fresh Food Farmacy” program, under which physicians may write prescriptions for free, including healthy food for food-insecure patients with diabetes. More recently, Kaiser Permanente announced a $200 million investment to combat homelessness and BlueCross BlueShield of North Carolina announced an investment of $50 million in community health initiatives.
Government payers also have begun taking action. At the federal level, the Center for Medicare & Medicaid Innovation is testing a model that uses screening, referral, and community navigation services to identify and address health-related social needs. Some states also have started similar work. For example, as part of its transition to Medicaid managed care, the North Carolina Department of Health and Human Services (NCDHHS) has stated that it will require participating managed care organizations to use a standardized statewide screening tool covering housing, food, transportation, and interpersonal violence to identify patients’ unmet health-related resource needs. Patients will then be connected to appropriate community resources through a statewide platform being funded and developed by a public-private partnership. NCDHHS also will run regional pilot programs testing evidence-based interventions linking health care and social services.
Physicians agree that SDoH are an important factor in patient health outcomes. According to a recent survey, more than 45% of physicians agreed that it would greatly or moderately help their patients to receive information on how to get assistance to help them obtain affordable housing and sufficient food and/or to get help on how to increase their income. But at the same time,
no more than 5% of physicians thought that it was their responsibility to address each of these issues.
It’s true that physicians do not always have the necessary capabilities to address SDoH, lack the required time, and are not paid for these services; furthermore, patients often do have other resources for this type of assistance. However, it seems likely that the current emphasis from commercial and government payers on addressing SDoH will, at some point, have an impact on the expectations that depend on physicians and medical practices.
Physicians and practice managers should be on the lookout for future developments in this area so that they are best positioned to influence or adjust to any proposed requirements.
Much of the public attention on the opioid-epidemic has been focused on the harm caused by prescription use and abuse of opioids. However, there is another facet that must be focused on: opioid-induced respiratory depression in clinical settings.
ECRI Institute has repeatedly issued warnings in its annual report on health technology hazards about undetected opioid-induced respiratory depression (OIRD). In ECRI’s 2017 report, ECRI ranked OIRD as the fourth greatest technology threat, saying:
“Patients receiving opioids… are at risk for drug-induced respiratory depression. If not detected, this condition can quickly lead to anoxic brain injury or death. …Drug-induced respiratory depression is of particular concern for patients receiving parenteral and neuraxial opioids in medical-surgical and general care areas. However, it is also of concern for hospital or ambulatory surgery/endoscopy facility patients receiving opioids during procedural sedation and while in the post-anesthesia care unit.”
Increased use of patient-controlled analgesia (PCA) and the higher acuity of patients presenting with chronic disease and comorbidities, such as obesity and sleep apnea, combined with sporadic monitoring protocols, has significantly increased the risk of adverse or fatal opioid-related events.
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To-date, efforts at State and Federal levels and by health system leaders to grapple with the wildfire-like spread of opioids in communities across the country are underwhelming. According to the Association for the Advancement of Medical Instrumentation (AAMI) Foundation, 50 percent of medication deaths are attributable to opioids and each year more than 20,000 patients administered opioids experience respiratory depression arrests—costing the U.S. healthcare system $2 billion each year.
One potentially effective countermeasure is better monitoring protocols. Current practices are neither adequate nor comprehensive. For example, one of the most common methods—periodic physical spot checks by direct-care clinical staff—can leave patients unmonitored up to 96 percent of the time.
As such, continuous respiratory monitored is broadly recommended as a best practice by The Joint Commission, the Anesthesia Patient Safety Foundation (APSF), AAMI, and other healthcare advocates.
The challenges associated with reducing respiratory events are significant and many, including the financial implications of adding costly monitoring devices and full-time, direct care staff. Further, improvements to monitoring are clearly necessary: according to the Joint Commission’s Sentinel Event database, 29 percent of adverse events are related to improper patient monitoring.
There is also a concern that the implementation of new or additional devices with alarm capabilities will add to the growing problem of alarm fatigue. Many clinicians have expressed a reluctance to use monitoring devices because of the nuisance alarms that their use may entail.
However, as these devices play an essential role in capturing and utilizing real-time patient data for timely interventions, a concerted effort to should be made to mitigate this issue.
Monitoring typically falls into three broad categories, each varying in complexity and comprehensiveness of the surveillance. The first involves transmitting physiologic sensor measurement data and alarm signals sent from multi-parameter monitoring devices to a central station. Patients may not necessarily be continuously monitored in such cases.
The second is sending the preceding data and alarm signals to a telemetry room, which can be quickly and easily overwhelmed by the hundreds of alarm signals that could potentially be generated by a single patient.
The third—and arguably most sophisticated—category is the use of smart alarms—tailored to specifically identify clinically actionable notifications—that are transmitted to a device held by direct-care clinical staff. This approach provides an accurate and real-time picture of a patient’s condition, enabling direct-care patient staff and physicians to intervene before a patient begins to deteriorate. Moreover, attenuating alarm data achieves the balance between communicating contextual patient-safety specific information and minimizing false alarms or events that are not indicative of a threat to patient safety.
Finally, smart alarm strategies allow for not just the analysis of the alarm signals themselves, but also the high-fidelity physiological data associated with them, including time trends, in-depth alarm sensitivity and statistical and predictive analysis.
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Nine in 10 hospitals indicated they would increase their use of patient monitoring, particularly capnography and pulse oximetry if false alarms could be reduced. However, the number of alarm-enabled medical devices on the market today, narrow alarm limits, and inaccurate default settings can make alarm management a complex endeavor.
Several techniques and strategies exist for reducing alarms, including trending alarms, which expand or contract patient alarm limits on individual devices; consecutive alarms, in which patterns of a consistent alarm detected, occurring over a clinician-defined period of time; sustained alarms, which requires setting a minimum time threshold that an alarm limit must be violated prior to sounding the alarm; and combination alarms, in which multiple parameters from different devices occurring simultaneously may together indicate a degraded patient condition.
More particularly, how alarms may be configured may significantly impact the number of nuisance alarms received and whether alarms may be missed. Recently, ECRI Institute issued its Top 10 Health Technology Hazards for 2018. One of ECRI’s 2018 concerns is how missed alarms may result from inappropriately configured secondary notifications devices and systems.
In a recent clinical education podcast, “Improving Patient Safety and Reducing Alarm Fatigue,” Marc Schlessinger, RRT, MBA, FACHE (Senior Associate, ECRI Institute’s Applied Solutions Group) discussed ECRI’s concern, saying:
“The true value comes when the devices are used properly. When we do an integration for middleware and secondary alerting devices at a hospital, the most common request is that pretty much every alarm goes to the device initially, which is totally the wrong approach. So, what we try to do is convince the nurses and respiratory therapists that the only alarms they really want to see and hear on their personal devices are critical alarms and actionable alarms. However, again, you don’t want to just take the ventilator or the physiologic monitor, and make every alarm go to your device, because, at that point, you’re doubling your alarm fatigue, because not only is the device alarming and the central station alarming, you then have the alarm on the person.”
Appropriately configured secondary notifications devices and systems rest on algorithms. As Maria Cvach, DNP, RN, FAAN (Director of Policy Management and Integration, Johns Hopkins Health System) explained about the development of algorithms that has enabled Johns Hopkins to better manage alarms:
“It is important when you’re using middleware to develop algorithms and those algorithms need to be developed at the level of the alarm. So, for instance, you can have an algorithm for a ventilator alarm in which it goes to the respiratory therapist first, then it goes to the nurse, then it goes to the secondary nurse, and then it goes to the charge nurse. But, it’s really important that you have those algorithms built at the level of the alarms, because, like Mark said, a lead fails, you may not want that to go immediately, because you know somebody is moving around or they’re just readjusting something, so you don’t want that to go immediately, but certainly you don’t want to wait 30 minutes or have your algorithm be 30 minutes apart, you have to be rational on how you develop your algorithm. And, that’s the beauty of the middleware, is you can write all these rules within the middleware. I think that we have at least 10 to 20 algorithms for our devices and how they work. And, one of the things that we have done is in case someone has failed to put their escalation system in – and, of course, that’s subject to change as your staff change. So, we have it set that if somebody fails to put in the primary or the secondary person, it’s still going to go automatically to the charge nurse. The charge nurse is automatically going to get it. So, if the charge nurse starts getting all these alarms, they know that somebody hasn’t been put in as the primary or the secondary, and they know to go and figure that out.”
Certainly, physiologic devices are critical components in continuous patient monitoring and capture a more complete and real-time picture of a patient’s condition. Capnography, along with continuous pulse oximetry monitoring, could provide a sensitive and early predictor of opioid-induced respiratory depression. Capnography is used to measure exhaled end-tidal carbon dioxide (EtCO2) and inhaled carbon dioxide (FiCO2) to determine a patient’s respiratory rate and generate waveforms (i.e., capnograms) of exhaled carbon dioxide over time. (See sidebar).
Just as critical is implementing a device-agnostic middleware platform for interfacing with bedside devices. Middleware can be leveraged to pull data from medical devices and combine it with other data in the patient record to create a more holistic and complete picture of the current patient state. Combining analysis with real-time data at the point of collection creates a powerful tool for prediction and decision support. The ability to track patients throughout the hospital, continuously add new devices, and distribute real-time patient monitoring to centralized dashboards and mobile devices should be a major consideration in technology selection.
Minimally, middleware needs to be able to retrieve episodic data from a medical device and translate it into a standard format. Additionally, middleware should be able to retrieve data at variable speeds to meet the requirements of various clinical operational settings (e.g.: operating rooms vs ICUs versus medical-surgical units). Because data will be used for real-time intervention, any delay in their delivery to the correct individuals can have deleterious effects. As such, it is vitally important to understand the implications of requirements on data delivery latency, response, and integrity.
These include FDA requirements, such as those required for Class II clearance. For a middleware vendor to claim clearance for active patient monitoring, they must have all the checks and balances in place to ensure the receipt and delivery of all active patient data for intervention purposes from end to end—from collection point (medical device) to the delivery point (the clinician). Again, the ability to deliver on the timing and receipt of data necessary for interventions and active patient monitoring is an important distinction.
Many of the doomsday scenarios associated with failed technology adoption and implementation can be mitigated with adequate planning, training, and collaboration. By listening to, engaging with, and educating direct-care staff, hospitals can dramatically increase their chances of success with continuous monitoring.
A great example of a hospital monitoring its patients while managing alarms is Virtua Memorial Hospital. Leah Baron, MD, who is Chief of The Department of Anesthesiology at Virtua Memorial Hospital, in a clinical education podcast spoke about the experience of Virtua Memorial Hospital in improving patient safety and reducing alarm fatigue:
“ … when we first introduced capnography to monitor patients for respiratory depression related to their opioid therapy, we very quickly found out that the number of alarms that were bombarding our healthcare workers was unmanageable. And, the reality was that they could not respond to all of them, but a lot of them were just pure noise. And, that’s why we realized that if we want to use this effectively, we needed to figure out how to identify these actionable alarms and filter the noise, and that’s why, subsequently, we decided that we’re going to do another study and see if we can achieve better results with that.”
By connecting capnography to middleware, Virtua Memorial Hospital has been able to distinguish between actionable and non-actionable alarms and help them to escalate actionable alarms when they occurred. As Dr. Baron describes:
“So, we selected patients with what we thought have a higher chance of having this respiratory depression – patients with significant serious sleep apnea undergoing major surgery. And, we created these algorithms that we wanted to test on our med-surg floors and see if they meet our expectations. So, that was our goal in this study. And, we actually were able to significantly reduce our alarms, without having a single patient event that went unnoticed.”
How will this new technology impact how nurses deliver patient care? What adjustments in workflow and practice need to be made—at go-live and beyond? Starting with these questions can foster buy-in from the staff that will be utilizing this equipment. If end-users are not involved in the selection, adoption, and implementation of a technology, then the likelihood that they will be an enthusiastic user of that product is significantly lower.
For example, nursing staff are charged with the proper setting of the alarms and the prompt response when any of the devices send an alert. As the presence of alarming equipment continues to grow, nurses find that their workflow and ability to engage with patients is disrupted as they chase down hundreds of (often non-actionable) alarms. Without proper education and implementation of alarming devices, it’s all too easy to imagine clinical staff arbitrarily adjusting alarm settings—or even turning them off entirely.
Thus, an expert project team should be formed, ideally comprised of leaders from myriad stakeholders; from IT networking and facilities, to informatics nurses and direct-care clinical staff. This team will be responsible for every phase of deployment, including goals identification, vendor evaluations, business and clinical requirements, and progress assessments.
In describing the experience of John Hopkins Hospital, Ms. Cvach emphasized that putting together an interdisciplinary team is a critical first step to better alarm management:
First of all, if you’re going to get started at your hospital, you need to convene an interdisciplinary alarm management committee. I emphasize the word “interdisciplinary,” because a lot of times when I’m asked to consult, I’ve noticed that they’re asking one department to fix the problem, like nursing or engineering. It really is an interdisciplinary approach and you need to include people from various disciplines – respiratory therapy, nursing, physicians and include the bedside user, because they’re the ones who can really give you what the problems are and tell you whether or not you’re possible solutions are going to work. So, convening an interdisciplinary committee is step one.
Designating an executive stakeholder, nursing champion—or empowered super-user—at the outset is also recommended.
Finally, avoid minimizing clinical workflow, as this largely defines how data is collected, how it is displayed, and what is displayed. Hospitals should incorporate clinical workflow as quickly and as early as possible in the process.
Both patient-managed and staff-administered pain medication are necessary for the patient’s well-being in the hospital. However, their use presents the real risk of overdosing and death, especially for patients with complex chronic conditions and comorbidities. Continuous monitoring can help improve patient safety while keeping the patient comfortable, but the careful implementation is necessary to avoid a negative impact on the staff and environment the patient depends on for care.
In addition, improved inpatient care contributes to better post-discharge outcomes and can lead to fewer readmissions.
Given the rising incidences of in-hospital opioid-related adverse events and deaths, hospitals should commit, soon, to a strategy for ending them.