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Engaging Patients: My Two Hats as a Patient

Understanding the Whole Patient

I have trained to be a researcher. To methodically seek out the answers to research questions, to be objective, to be analytical, and to base my conclusions on scientific evidence. Unexpectedly, four years ago, I was required to change hats-from scientific researcher to that of patient. The transition was difficult for a number of reasons. I have always been the person in my family to whom others turn to for health advice. Being organized, planning in advance, and enabling others is a critical role for me. Additionally, my sense of control comes from being informed. Having all of the available facts is important to me.

From my patient experience I have come to appreciate that patient engagement exists on a spectrum from being informed to being empowered. Patients generally expect to be informed and guided by their health care providers. In other situations, patients may welcome additional engagement opportunities with the goal of being consulted and/or participating in personal healthcare strategy design, and finally, empowered to self-manage their healthcare. It is imperative that health innovation and healthcare stakeholders acknowledge each individual patient’s persona as driving needs and expectations regarding quality of life, as well as engagement.

The WHO defines quality of life as “…a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment”. I would suggest that in addition to the above, that life experiences, comprise the whole patient. For me, this implies that given my current life status and responsibilities, my experiences and education as a biopharmaceutical scientist, the level of engagement that I seek is that of empowerment. Information, discussion, consideration of all options, an understanding of my personality and stressors were important during my journey as a patient. Given the tight schedules for all in the healthcare system, how is it then that I gained my sense of control and empowerment as a patient? First, and most importantly, my primary healthcare provider had already taken the time to understand me as a person and my holistic needs. She actively listened to me and was able to empathize with me. Through storytelling and presenting options from my perspective she guided me through the diagnostic process. She knew what my stressors would be and what options might work best for me for the long-term. I sincerely thank her for the time she took to view me as a whole person.

Recently, it was the opportunity to participate in a co-design process as a patient that I truly gained my sense of control and felt completely empowered. During the co-design process, I was provided the opportunity to interact as a patient with the designers of a medical device. Through preliminary testing of the device, I was able to suggest the challenges the patient would face and how the patient might hope to engage with the device with the goal of self-management. The iterative design process was empowering for me as a patient. I learned that beyond the sourcing of information and assuming the role of partner during my health journey, it was equally important to me to participate as co-designer in the innovation process. I could tap into my dual experiences as a researcher and patient to co-design a device that would be functional, easy to use, durable, and effective whilst taking into account my daily routine and expectation regarding quality of life. Each iteration brought us closer to these goals. Of importance is that patients will each have their own individual goals and expectations for engagement. It was my life experiences that have driven the need for engagement at the level of co-design. Other patients may gain their sense of control through information, guidance, and consultation. Ultimately, the objective for health innovation and healthcare stakeholders is to take the whole patient into account-driven by his/her demographics, functional, psychological, cultural, socio-economic needs and context as well experiences. It has become imperative that we design health innovations and health services for the whole patient. Supporting this in the biopharma and healthcare context is the understanding that while progress has been made with respect to patient engagement, stakeholders must appreciate that much more progress needs to be made to fully engage diverse patients across their health journey. Ultimately, the design of products and services should be guided by the whole patient’s needs, desired level of engagement, and need for behavior change by both patients and their healthcare providers.

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