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.
What is patient centricity?
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.*
Our love-hate relationship with technology
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.
Patient centricity and the Patient Shark Tank
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.
The importance of health literacy
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.
Progress to date–the big picture
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.
The good news is, things are improving!
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.
For a visual summary of the conference check out our Wakelet here!
 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.