Understanding the value and importance of placing the relationship at the center of patient engagements
Throughout my doctoral program in Health Communication, I was able to capitalize on the fact I was also working full-time as a researcher and instructional designer for a company that provided patient education services for pharma and biotech companies. Almost every class paper and project examined the relationship between clinicians who provided that education and the patients prescribed their company's product. This was a unique exploration as most of the existing literature on patient-provider interpersonal communication tended to focus within the clinical setting. My academic pursuit of this topic culminated a few years ago with my dissertation project, a qualitative study that sought to understand the communication experiences of twenty-six pharmaceutical-sponsored clinical educators and how they developed and navigated trust-based relationships with patients.
Even before this project, I had a great appreciation for the job these nurses and clinicians did. But I truly didn’t understand the degree of integrity, compassion, and of course, pluckiness that drove them. That’s one of the purposes of this blog, to give voice to that passion. One of those voices is Iris, a clinical nurse educator who channeled an Eastern philosophy into her work:
“Do you know the Buddhist concept of loving kindness? ...It is being able to look at that person and truly in your heart consider what their need is. That’s that nonjudgmental thing. It’s that going in where the patient is and being able to truly have their interest at heart” [1]
But my research also brought to light those industry regimentations that impeded nurses’ passion, such as those experienced by Cora, a telephonic clinical educator:
“We’re moving into a whole different spectrum of just looking at how many calls per hour…it's getting away from the holistic style where we spend time with the patient and assess their strengths and barriers, what they need to learn” [1]
A primary theme that arose from my study and from my own experience as a designer of patient support programs was that we value and strive for an interpretation of the concept of patient centricity in which there is open and honest approach to patient engagement and communication--one that provides unfettered information, ideas, and opinions. Of course, such an interpretation is an idealistic goal, not a realistic one as evidenced by Cora’s comments.
I learned early on there was incongruity between the way the industry, as a whole, presented themselves as champions and implementers of patient centricity and the actual actions they were willing to take to live that ideal. For example, one of my very first projects was designing nurse educator call guides to be deployed for a series of telephonic engagements to promote product adherence. Per my design, the opening line of that guide instructed the educator to greet the patient using a simple gesture such as “Hello I’m (name). How are you doing today?” I was shocked during the first internal review meeting with our client to be told educators could not ask that question, or any similar greeting, as doing so risked provoking an adverse event disclosure. I couldn’t help but wonder how one of the most common tactics for demonstrating interest and empathy toward a patient’s situation was deemed inappropriate. How was an educator to establish rapport, yet alone a requisite trust bond, if they were forbidden from inquiring about the patient’s well-being? Are we really being patient centric if we’re adverse to hearing patients’ true and honest experience with their disease and treatments?
It’s a perplexing concept this ideal of “patient centricity”. In fact, I would often joke with colleagues that if you ask ten different people in the industry what it meant, you will get ten very different, highly amorphous answers. In its most literal and purist sense, it asserts that the needs and values of patients are given full and complete deference in how products and services are developed, commercialized, and utilized. But clearly this is not the case. Nor could such a definition ever be realistically realized in an industry driven by profits, shareholder demands, and government regulations. But we talk about it, A LOT. For example, here’s an activity you can also try. When I Googled the exact phrase “patient centricity”, I got over 246,000 results, many of them appearing in industry websites and Twitter feeds you’d expect—pharma, healthcare consulting, hospital systems, advocacy organizations, medical communication agencies, etc. as well as a few surprises such as shippers FedEx and DHL, global legal firm Baker & McKenzie, and global tax firm CohnReznick.
I then went to PubMed Central (NIH’s aggregator database of health and medical science research with over 21M unique listings) and searched for that same phrase. It returned a paltry 156 results—and this is with the term being used anywhere in the article. When I limited the phrase to just appearing in the title, thereby inferring it would be the main topic of study, I get … 31. Curiously, the first mention of the concept was as recent as 2013. So, while there is lot of chatter about the concept in our current healthcare macrocosm, it’s not exactly a topic to which we’ve devoted a whole lot of peer-reviewed research. And this is concerning because that means there is not a universal or cogent understanding of the concept, yet alone a solid evidence base on which to structure products and services.
By contrast, when I searched PubMed for the exact phrases “patient-provider relationship” and “provider-patient relationship” I got over 1,000 responses with first mentions of the terms appearing in the late 1980s. Limiting those two phrases to just the article title, I received 92 results. Obviously it’s a topic that, at least from a scholarly perspective, we value more and understand better. In fact, there are many well-regarded models, frameworks, and theories about the nature of the patient-provider relationship and the communication that occurs between them. One of them by Emanual and Emanual [2] is profiled in the two-part blog post “Doctor John and the Surreptitious Assessment” and others will be forthcoming in future posts.
I bring this forward because, when it comes to the way the life science industry is currently choosing to engage with patients, they are seeking guidance from a nebulously defined and poorly studied construct that, for all intents and purposes is difficult, if not impossible, to authentically operationalize. A more realistic approach would be to focus on or “center” the needs and values of the relationship that the industry creates between their patients and their patient engagement specialists. This approach is not only backed by a stronger canon of research, but it can also better accommodate the industry regimentations that often stymie a purely patient-centric approach. Importantly, a relationship centric model recognizes and respects the beliefs, needs, and values of the patients as well as the clinicians and agents who work to establish a trust-bond with them. It understands that there are TWO intersecting journeys, both with challenges and pain points, but both with the same goal—empowering patients so they are motivated and confident in their ability to adopt behaviors that lead to better health outcomes.
Iris, quoted above, worked to center her relationships with patients within the Eastern construct of loving kindness. Interestingly though, it was balanced with a passionate and no-nonsense persona that inspired them to do better. In fact, Iris was less of a chilled hippy Bohemian and more a fiery Italian grandmother akin to the likes of Marie Barone, the loving, albeit often meddlesome, character played by one of my favorite actresses, the late Doris Roberts in the 1990s sitcom Everybody Loves Raymond. I think that’s why I connected so well with her during our interview. She’s one of those rare individuals capable of sparking that latent pluckiness hidden in each one of us.
[1] Barshinger, T.A. (2020) Interpretations of communication experiences of pharmaceutical-sponsored clinical educators (Doctoral dissertation). Retrieved from ProQuest Dissertation and Theses database (UMI No. 28086978) [2] Emanuel, E. J., & Emanuel, L. L. (1992). Four Models of the Physician-Patient Relationship. JAMA: The Journal of the American Medical Association, 267(16), 2221