When Patients Partner with Researchers

In ADAPTABLE, patients are more than study participants, they are partners with researchers and clinicians to improve cardiovascular health for all patients and those who care for them. Adaptors are patient representatives who have been involved in ADAPTABLE from the beginning. The Adaptors team works alongside the study team, participating in team meetings and providing review and input to the protocol, consent form, study portal, and study materials.

We talked with one of the Adaptors, Bill Larsen, who provided his perspective on the value patients bring to clinical research, the importance of patient-centered research, and the ADAPTABLE experience.


How can patients inform researchers in clinical trials?

I find it useful to think of medical research as a team effort. There are roles best suited for researchers and those best filled by patient representatives.

On the research side, there are leadership, operations (day-to-day research activities), and clinician roles. In addition, there is oversight by the Institutional Research Board (IRB) that reviews all proposed research to ensure that patient privacy and security concerns are addressed. An even wider net would include roles filled by the research funding sources and the health plan providers.

On the patient side, there are participants who are directly involved in the research study, the larger community who suffers from the condition being researched, and someone like me, the patient representative, or as we are known in ADAPTABLE, the Adaptor, who provide the patient perspective. There are seven individuals who comprise the Adaptors team. Although, we each bring varied experiences, we share a common thread of having heart disease or caring for a loved one who does.

As an Adaptor, I fit somewhere in the middle of the research team. It’s my responsibility to understand the various perspectives of the researcher, the study participant, the heart patient, and the views of my fellow Adaptors.

I view my role to be that of a communicator, asking questions that are sensitive to the roles of each player and of interest to those represented in the research study, and providing relevant information and feedback to the concerned parties. Active dialogue among all concerned is what enriches the conversation and leverages the contributions of each individual to best achieve the research goals of the team.

Here are a few of the questions that I have raised in ADAPTABLE, and continually review, as the project proceeds:

  • Is the proposed research really important to those most affected by the disease being studied?
  • Does the recruitment approach present any obstacles to the study participants?
  • Are the written recruitment materials clear and appealing?
  • Do follow-up calls to initial inquiries cover the points I believe are most important?
  • Are expectations for patient participation realistic?
  • Are safety and security issues satisfactorily addressed?
  • How will the participant be kept informed during the research process?
  • In reporting the final results, are there at least some that will be written in lay language?
  • Will results be distributed for maximum coverage to the affected population?

Patient representative can help ensure that the answers to these, and other, questions fully reflect the interests, concerns, and welfare of the entire patient population.

Why is patient-centered research important?

Until recent years, the focus of medical research has been heavily weighted toward basic science. This is understandable and undeniably important. It is essential for the development of new medications and procedures designed to benefit the patient.

But before the findings of basic science can be implemented, they must be tested in a real-world setting. The branch of medical research devoted to this stage is called “translational.” In order to translate the findings of basic scientific discoveries into actual solutions, they need to be tested in a controlled environment, typically in a clinical setting where the doctor and patient interact. How to achieve this is more complex than meets the eye. The concerns of both the doctor and patient must be addressed by the translational research team before success can be achieved.

Until recently, the voices of the researcher and the clinician were paramount, with only peripheral attention given to the concerns of the patient. One of the most significant provisions of the Affordable Care Act was the creation of the Patient-Centered Outcomes Research Institute. As its name suggests, this organization places primary emphasis on the PATIENT. It gives the patient an equal voice along with the researcher and clinician in the conduct of translational research. The ADAPTABLE study is a paradigm example of how this process has been put into practice.

From the very outset of the ADAPTABLE study, we Adaptors have provided the patient perspective in all aspects. We represent all areas of the country and bring great diversity of gender, race, ethnicity, and age. We work side by side with the research team and the other parties at every stage and throughout the endeavor. We raise key questions and will continue to do so throughout the duration of the project.

What activity do you appreciate most from your work on the ADAPTABLE Study?

It is the complete immersion in the whole research process, the opportunity to view it from the inside out and feel empowered to have an impact on a study with results that may potentially benefit so many people. From this, I have gained a greater appreciation of the complex environment of medical research, and the underappreciated importance of the expanded role the patient must play for the benefit of all.

Before my involvement in ADAPTABLE, I regret to say that I was a somewhat passive follower of medical research. Like many people, I am dealing with multiple health issues. I have surveyed the literature pertaining to these issues and have been frustrated by the difficulty of understanding and assessing these findings in their technical jargon, and even more frustrated at the slow pace of the findings. Why can’t they speak my language and why can’t they produce useful results faster?

Since ADAPTABLE, I have come to realize that THEY is US, and WE (patients) are being given the power and the voice to make a difference; we can accelerate the process by being more receptive to participating in research. We can no longer remain passive. We must get more involved. You might ask, “How?” There are many ways. You can participate in a research study or, similar to the role of the Adaptor, provide your perspective in a study. Other ways to get involved include participating in focus groups to help advise researchers on issues pertaining to your health condition during the formative stages of a project, or simply raising awareness within your communities of the importance of patient involvement in the research process.

I can personally attest to the benefits I have gained through participation in ADAPTABLE. Primarily, I can say unreservedly that the entire research team, from interactions with study leadership to the operations staff, we patient representatives participate on a peer-to-peer basis. They not only welcome our input, they seek it out. Secondly, I value greatly the interactions with my fellow Adaptors. We have only met twice in person, but we talk by teleconference biweekly. Although our common denominator is heart disease, we have personal implications that affect our lives in different ways. I am the richer for knowing the many ways in which each of us copes. The bond we have developed will last beyond ADAPTABLE.

What activities or hobbies do you enjoy?

I play duplicate bridge (competently but not expertly), participate in a twice-a-month Great Books Discussion group, listen to music (mostly classical, with a preference for live performances), love great movies, travel (summer music festivals are a special treat), do a little birding (with my wife, the real birder—600+ species on her life list), and follow my hometown Chicago sports teams (Go Cubs Go—please do not make me wait another 108 years for a World Series crown; I might not be around).