In the last decade, several initiatives have helped patients become a more integral part of the research process. PCORI’s Advisory Panel on Patient Engagement is instrumental in prioritizing patient focused research questions. The FDA’s Patient-Focused Drug Development initiative gives patients the opportunity to share what they think is important in condition-specific meetings. The OpenAPS project, run by people living with diabetes, helps patients reduce the burden of treating the disease and manage their lives in an entirely new way.
PatientsLikeMe, a patient network founded on the belief that patients are the best source of information about living with and treating disease, helps people share their health information to improve their own and others’ outcomes, and to fuel research.
Driving patient participation
Patients should be involved in every stage of the research process.
While all of these efforts have been good for patients and for researchers, they haven’t gone far enough. Patients should be involved in every stage of the research process. Why aren’t they? We assessed information previously collected from our members, and the results of our study aren’t so surprising. While patients are primarily interested in research specific to their own condition, there are four themes driving their participation. Patients want to:
- Facilitate provider-patient communication.
- Improve understanding and communication of medical information from healthcare providers to patients.
- Understand the cause and nature of their disease.
- Bring a more individualistic approach to healthcare and participate in the decision-making process.
There is a significant gap in communication between patients and researchers, and it must be addressed.
But there is a significant gap in communication between patients and researchers, and it must be addressed. In the words of one study participant: “The obvious perspective is that patients should have some voice in decisions regarding what research should be conducted, what the participants in research should be expected to do, how participants in research should be selected, and how results of research should be communicated.”
How can we improve researcher-patient communication, so we can work more effectively together and conduct better research? Here are some ideas for both researchers and patients.
First, researchers must:
- Involve patients throughout the entire research process, particularly in the early stages of conceptual development where they are underrepresented. Organizations like the James Lind Alliance can help with balancing research priorities and patient needs.
- Practice participatory research. Establish an ongoing relationship with patient stakeholders using available resources and toolkits, such as those provided by Patient + Family Engagement in Healthcare.
- Avoid tokenism, as described through Arnstein’s Ladder. Imagine being the one patient on an advisory board full of professionals–daunting!
- Test research procedures with patients before studies are launched to uncover patient-centered concerns like burden, intrusiveness, comprehension, and relevance.
- Make published articles readily available to patients. Open access is a good place to start.
- Provide free registration slots at conferences for patients to attend.
- Provide education to patients about how to evaluate the value of research studies.
To become partners, patients must be more actively involved in their own care:
- Demand attention and information about clinical trials from their doctors. Ask them to help with involvement in the drug development process.
- Join PatientsLikeMe or other forums to share health data, learn more about their condition, and share their experience.
- Join a patient advocacy group.
- Check out organizations like EUPATI, which offers opportunities to get involved and resources for how to get involved.
- Volunteer to be a patient peer reviewer for a journal such as Research Involvement and Engagement, The BMJ, or Journal of Participatory Medicine.
There’s a long journey ahead to optimize the patient-researcher relationship and conduct the most meaningful research for patients, but the progress thus far is promising, and will lead to a healthier tomorrow.