By Linda Adler
A serious medical diagnosis has never been easy. It’s often terrifying, disruptive to one’s routine and livelihood, and may impact family, friends and colleagues. Additionally, cultural changes bring new challenges: families often live far from each other, medical centers are complex, and insurance and billing issues present major obstacles, to say nothing of stress. So it’s not surprising that new professionals are entering the marketplace, armed with unique skills and talents that enable them to successfully address these challenges. Private Professional Patient Advocates are opening businesses at a rapid rate all over the United States, and major medical centers such as Stanford are hiring Patient Navigators as an integral part of their care teams.
The effort to engage and assist patients has been growing steadily over the last twenty years, and notable approaches have emerged to help patients increase their involvement in their medical care. A couple of decades ago, research on geographic variation and subsequent variability in outcomes gave rise to Shared Decision Making, where patients were offered decision aides to help them learn about their diagnosis in order to make informed decisions in partnership with their medical providers. As personal computers have become ubiquitous, there has been the accompanying emergence of “e-patients”, where health consumers participate online to share experiences, offer advice and crowd source their data. Finally, propelled by current legislation and the emphasis on preventing hospital readmissions, we see the emergence of the “patient centered home”, where patients are the focus of the care plan.
It’s logical then, given the momentum, that there’s an interest in expanding the care team to provide professional expertise in assisting patients with the complexities of illness. Furthermore, given the decrease in resources for more traditional roles such as social workers and discharge nurses, combined with the decreased time for medical office visits and the trend toward chronic disease management via phone and Internet, it’s no surprise that patients are turning to professionals who can provide more personalized assistance in their difficult journeys through illness.
Advocate or Navigator?
There is a difference between a Patient Navigator and a Patient Advocate, although the roles sometimes overlap, and there are many examples where the distinction doesn’t necessarily hold true. In general, however, a Patient Navigator works within the medical center, is compensated by that organization, and assists the patient in getting the most out of that particular system. Navigators provide a range of services: some are focused on helping patients figure out where services are, how to book them and how to use them effectively. Others, generally nurses, specialize in helping patients understand their diagnoses, their treatment plans, and their medications. Navigators are generally more readily available via telephone and email than are the physicians they work with, and can explain complex medical concepts or medication challenges and prepare patients for medical visits.
Private Professional Patient Advocates typically work independently, outside of the medical center, to assist patients with decision-making, information gathering, obtaining support services, and preventing insurance overcharges. They are often nurses or social workers or have some other medical training and experience. They are compensated either on a fee for service basis if they are a for-profit company, such as Allied Health Advocates, or services may be provided at little or no charge if they are a non-profit organization like Health Advocacy Solutions.
The major difference between the in-house Navigator and the Private Advocate is that the former works within the system and helps to increase access within it, whereas the latter is an independent professional who is unencumbered by systematic concerns. This is not to say that Patient Advocates aren’t familiar with Best Practices or systematic procedures, it’s that they have the added ability to bring a fresh perspective to their clients and meet individual needs not always available within a medical system. They are free to help the patient explore a wide range of treatment options and refer across both the allopathic and complementary medicine spectrums.
Challenges to the Profession
As is the case with any new profession, attention needs to be paid to the key barriers that could potentially prevent more widespread adoption. For these professionals to be fully accepted into the health care system, resolution of these factors needs to be addressed.
First, issues such as licensure and accreditation are paramount. While the medical center staff can determine requirements for their Patient Navigators, there aren’t universally accepted guidelines for training or licensure for Patient Advocates. Fortunately, new training programs, such as the Masters program at Sarah Lawrence College are popping up rapidly, and ethical guidelines and accreditation are being promoted by national advocacy groups such as the National Association of Healthcare Advocacy Consultants. In the meantime, patients need to ask a lot of good questions before hiring an advocate, so as to ensure that they are putting their trust in someone with adequate education, training and experience.
Second, not nearly enough research has been done to demonstrate the impact of patient advocacy on patient satisfaction, treatment outcomes, and health care spending. In preparing this article, a surprising lack of data was revealed, data that could substantiate the efficacy of the current trend. While we can make assumptions based on outcomes gained from similar kinds of interventions, data specific to the profession would be welcome. Membership organizations and the medical research community should be pressured to undertake such studies in the near future.
Third, the issue of compensation looms large. Since the cost of a private Advocate is not negligible, demonstrating the cost/benefit ratio in a clear and understandable format is crucial. There is no doubt that Advocates provide a valuable and worthwhile service, but too many patients pass on them due to their concerns about costs. While Patient Advocates are doing their best to promote their profession, there needs to a parallel effort from within the medical center to shine a light on their value and to refer patients to them. Not only would this build confidence among patients, it would also be beneficial to the physicians, nurses and social workers making such referrals. Given the time constraints and large panels that so many health care providers are faced with, it would make sense that the opportunity to refer patients to a competent professional who isn’t working under such constraints would be appealing. Perhaps this new profession will find ways in the future to establish better partnerships and referral streams from within the medical center.
Last, the focus of private Advocates needs to be broader. Currently, the majority of Advocates work with seniors, and they provide much needed case management, housing assistance, family support, etc. As they become more plentiful, however, Advocates must expand their services and move into other specialties so that the medical and patient communities become more comfortable with their offerings. There is definitely more need for both Advocates and Navigators in pediatric, rehabilitation and complementary settings.
Recommendations for the Future
In closing, it’s important to consider and highlight efforts that may positively influence the direction of Patient Advocacy. First, it’s essential that Advocates and Navigators maintain a collaborative spirit when working with other professionals in the health care setting. Many times we are brought into the mix when the situation is already challenging and adversarial. We need to take care to retain our spirit of cooperation and resist the temptation to adopt an adversarial tone. We will be most successful if we remember that to really be effective we to educate those within the system as we simultaneously help our clients. Our professional approach and continued respect for staff members who work under continual pressure in difficult circumstances will speed the adoption of our services.
We also need to step outside of our work with patients and promote our industry in various ways. We can serve on hospital boards, participate on Government committees and speak at public service events. In offering our help and support we gain the opportunity to share our expertise, our commitment to our patients and demonstrate our competency. While we tend to think of ourselves as advocates for the individual, we need to remember that everything we do to improve the health care system helps those individuals as well.
Finally, the term “patient advocate” may not be the optimal one to describe what we do. Typically, the term “advocate” implies a political or social movement, or it describes legal representation. In our case, the use of the term “advocacy” can easily be misinterpreted to imply that the something is inherently wrong and we are there to fix it. This often leads to defensiveness on the part of the health care team and prevents us from having more access to their patients. It also incorrectly suggests that advocates aren’t already available in the system, and many of our best physicians, nurses and social workers take issue with this. Perhaps there is a better title, something along the lines of “Patient Expert”. Our real value lies in our unique ability to represent the patient’s point of view. Our training and experience enable us to understand the patient experience, to appreciate each individual’s unique needs, to find personalized solutions, and to provide partnership to them and their loved one’s all along the way. While there are always opportunities to navigate and advocate for a patient, it is only part of the range of services that we can provide to our clients. We are patient partners, teammates, and personal coaches. In short, we provide the valuable toolbox that patients and their loved ones most need when faced with a medical challenge, and that is that skill that qualifies us most to be an integral part of the health care experience.
Linda Adler is the Founder and CEO of Pathfinders Medical, a patient advocacy organization that offers experienced, skilled service providers to address all of the challenges that accompany a medical diagnosis.