February 02, 2017

Could you explain patient engagement to your grandmother? If not, you are not alone. Many people struggle to explain patient engagement to those less familiar with it, whether they are a family member, a member of the C-suite in a company or a research assistant in a lab. In November 2016, FasterCures published Expanding the Science of Patient Input: The Power of Language to help break down the various terms and definitions and move toward a common language around patient engagement.  

It turns out that encouraging agreement on definitions is the easy part. Reaching agreement will take more work to understand how commonly used terms and definitions are related to one another and the contexts in which these terms are used.

That said, we are not as far from a set of common terms and definitions as we once were. The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Patient Engagement Working Group recently presented preliminary results of its systematic literature review identifying key definitions for “patient engagement” and “patient-centered.” Despite our different approaches, the findings are highly consistent with our own and encouraged us to dive deeper into our findings to extract new recommendations and strengthen some of our current ones.

One key finding is that the field uses the word “patient” in front of a lot of words.FasterCures’ search found that nearly half of all terms began with “patient.” The ISPOR literature search was restricted to 14 terms that included “patient,” and its preliminary results yielded nearly 200 definitions. The fact of the matter is that putting “patient” in front of another word doesn’t make it patient-centered unless the definition reflects the principles of putting patients at the center of the effort. If we want to be successful in fostering and measuring patient engagement, we have to narrow the field of definitions. But how?

Step #1: Don’t use terms without defining them. FasterCures found numerous documents and websites using terms related to patient engagement that failed to define them. ISPOR’s review faced similar challenges. This contributes to the noise in the field. Terms are meaningless without definitions, and their use threatens the substantive work to build a science of patient input and stalls the field at talking points. The Institute of Medicine’s definition of patient-centered care is clearly defined: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Defining terms is a critical and necessary step, but it is insufficient in narrowing the array of definitions.  

Step #2: Be clear about context of use. In the Power of Language publication, we examined terms and definitions by sector and context, which reflected the need for variations across the field. But we believe the variation should not be at the sector level (Industry, Regulator, Research Funder, etc.), as it will be impossible to understand patient engagement as a whole. In contrast, there is less variation in the contexts of use, allowing the same terms to be used across organizations but with definitions tailored to the context.

For example, the definition of patient engagement in care delivery might include influencing the provision of medical care, while in health-related research the definition could include patients helping to identify gaps in research. In the context of research, the Patient-Centered Outcomes Research Institute offers this definition of engagement that is highly context specific: “the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results.”

Allowing fluidity of context is important and necessary. The opportunities to engage patients are constantly evolving, so the context can evolve, too. This allows patient engagement definitions, as well as future outcomes, to align with existing patient engagement models and be applied to new ones (for example, value frameworks).

Step #3: Definitions should reflect the purpose of engagement. Along with the context in which patient engagement occurs, we need to ensure there is a purpose. Otherwise, why bother? And that purpose should be reflected in the definition. The good news is that there are not infinite purposes for patient engagement, so including purpose helps narrow the field. To understand the purpose of patient engagement, it is helpful to look to the other terms we found that did not involve the word “patient.” These words suggest possible reasons why one would undertake patient engagement-related activities, and represent those things we wish to understand about patients’ experience or perspective that we can only get if we directly engage with them.

For example, public comments from the Biotechnology Innovation Organization reflect the purpose of patient engagement such that: “Patient perspectives can provide valuable input to drug development on how to develop clinical trial programs that can improve the efficiency and effectiveness of clinical research and address other issues that are important and relevant to patients.”

Step #4: Understand how the terms and definitions of patient engagement are related to one another. How does patient engagement, patient centricity and patient involvement differ from one another? Are they overlapping or distinct? These nuances of language are incredibly important because, when left unexplained, they hinder our ability to meaningfully talk about patient engagement and also measure its outcomes. Kristin Carman and colleagues grappled with this issue in their development of a framework of patient and family engagement in health care, suggesting patient-centered care is a broader term, one that could encompass patient engagement.

Perhaps most importantly, if we want to foster patient engagement, our language has to be clear and easy to understand. After all, grandmothers, members of C suites and research assistants can be patients, too. As FasterCures works with stakeholders to build the science of patient input, we will continue to push for more consistent use of terms and definitions and move toward addressing these challenges collectively.


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