Embracing The Patient-Centric Culture

American physicist and philosopher, Thomas Kuhn said that throughout history, science goes through periods of “normal science” and change.  In periods of “normal science,” everyone is “committed to the same rules and standards for scientific practice,” Kuhn wrote in his 1962 book, The Structure of Scientific Revolutions.  Change occurs when this existing paradigm fails to adequately “meet the problems posed by an environment that [existing institutions] have, in part, created.”¹

This type of transformation – which Kuhn called a paradigm shift – can be as tumultuous as a political revolution.  Today we are seeing such a paradigm shift in healthcare.

The previous paradigm, where medical professionals controlled the information and services that patients received in the healthcare setting was termed the physician-centered or medicine-centered paradigm.  There are two drivers for the paradigm shift that is occurring–the successes of the medicine-centered paradigm and the widespread use of information technology.

First, as Kuhn states, “success creates the environment that now necessitates change.”¹ The success of medicine-centered care has produced longer life for many people.  In so doing, medical conditions that may have ended life are now chronic and require self-management by the people affected.  Change that supports self-management is needed.

Second, the Internet, hand-held computers (mobile phones) and the rapid flow of information flow of information have changed and communication that has ensued also powers this shift. We can see some of this phenomenon illustrated in a recent work by my colleague Dave Taylor, “Inspire’s Second Annual Survey,” which includes data from over 10,000 patients across 2,600 different medical conditions.  With diagnostic tools and other resources literally in hand, both the sources of information and the flow of information have changed.

Patient-Centric Paradigm

The new paradigm of healthcare focuses on the patient. Instead of doing things for or to the patient, now the goal must be empowering and working in partnership with the patient.  The challenge for healthcare organizations, be they government or private, is to elevate the perspectives of patients and caregivers, incorporating their needs and priorities into the strategies they build.

The FDA’s new approach is illustrative.  For the first time, the FDA is inviting patients to meetings to discuss their needs and experiences in order to inform medical research.  Over 20 meetings have occurred since 2013 on subjects ranging from psoriasis and peripheral neuropathy to organ transplant and Huntington’s disease.²

For the pharmaceutical industry, embracing the paradigm shift may seem daunting.  Even the language used to discuss people with chronic conditions must adjust.  Words like compliance and adherence need to be replaced by patient-centric, empowering language.  Replacing this language is one of the challenges the pharmaceutical industry faces and the only way to proceed is through communication with patients.

Only by being open to the patient experience can a new language of medication-taking evolve. For example, the reasons behind not taking medications as prescribed are illuminating.  “I no longer take all my Rx because of cost. I no longer eat 3 meals /day to pay for RX,” one patient wrote on her 2016 Inspire Annual Survey.  Of the over 10,000 patients answering the survey,   Autoimmune and Neurologic patients were more likely to have gone without medications (60% of patients of each type) because of costs than Oncology, Metabolic and Respiratory patients who answered.

Since measuring patient outcomes is the new norm, a clear understanding of these outcomes is critical.  Is a medication that extends life by three months worth the experience if those months are dominated by pain and suffering?  What outcomes do patients and their loved ones want?  As the industry continues to collaborate on developing metrics, predictors, and guidelines to support Quality of Life, there must be a continuous balancing between analysis of condition-specific and persona-specific inputs of patients.

Building active listening to, or obtaining a continuous stream of insights from patients and caregivers into all aspects of product development must become standard for the pharmaceutical industry.  Every person in the company needs to understand how their job impacts patients and needs to assimilate this information into their work ethic.

But change is in the offing.  In March 2017, Victoria DiBiaso of Sanofi presented a case study demonstrating the benefits of patient involvement. “We’ve been working in collaboration with patients in development for 7 years  and in research for 5 years.  We’re seeing a transformative interaction within the company where a patient advocacy group that has worked with us in late stage development is now feeding information back in a very fluid manner to the research stage.  It has changed the thinking and the drive within the company, to make sure that everything we do comes through the lens of the people that we are serving and the reason why we come to work.  Our teams, the level of motivation, the call to urgency, when they come to work everyday has been elevated.”³

At the Halftime Show live interview at Stanford Medicine X 2016, Greg Powell of Glaxo Smith-Kline described a new role on the horizon for the company and the industry:  Chief Patient Officer.  As he notes, working at a pharmaceutical company doesn’t change the fact that,  “I’m first a patient.  I’m also a caregiver to somebody with a chronic disease.”  His experiences as patient and caregiver inform his professional life, “I tend to view things much more through patient and healthcare lens than I do as a pharmaceutical company.”⁴

The patient-centric paradigm necessitates two-way communication with patients and caregivers, and acts as the language bridge to better understand the ethnography of the patient experience.  That means not only learning from patients and caregivers, but also gaining their inputs and feedback much earlier in product development such as clinical trial design, product design, and many other areas that can impact the patient’s experience.   In other words, treating patients and caregivers as true stakeholders and partners.

References:

¹ http://projektintegracija.pravo.hr/_download/repository/Kuhn_Structure_of_Scientific_Revolutions.pdf

²  http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm347317.htm

³ DiBiaso, V. (2017, March) Large pharma case studies on the progress of patient involvement. Presentation at Patients As Partners Conference, Philadelphia, PA.

⁴ https://youtu.be/Uy_QxsN8B04.