The Power of Patient Research Partners: A New Voice in Healthcare Research
If you've ever heard the term "patient research partner" and wondered what it means, you're in the right place. Gone are the days when healthcare research was an exclusive domain of scientists and doctors. Now in healthcare research, patients are joining the fold as essential collaborators in the journey to better healthcare. Let's delve into what a patient research partner is, why this role is so groundbreaking, and how it can significantly impact research outcomes. If you want to learn more about the origins of participatory research and where we are headed, read this article here!
What is a Patient Research Partner?
The Basics
A patient research partner is someone who has lived experience with a particular health condition and collaborates aka co-researches with healthcare researchers in research projects. They're not just subjects of research (i.e. research participants); they're active in the research process itself.
No longer a “seat at the table” - but a new table built together.
Patient research partners have an equal voice in decisions about research goals, methods, and dissemination of results. They might be involved in formulating research questions, deciding on methodologies, or even helping to share the findings.
Why Do We Need Patient Research Partners?
The Authentic Voice
Patients offer a unique and invaluable perspective. They can provide insights into what it's actually like to live with a condition, helping to shape research that is genuinely relevant to patient needs.
Bridging the Gap
There's often a disconnect between the healthcare system, community and patients. The involvement of patient research partners helps bridge this gap, making research more accessible and understandable to those it directly affects.
How is This Role Different?
Not Just a Test Subject
Traditionally, patients have been the subjects of research but not collaborators in the process. This new role empowers patients to have an active say in research, changing the dynamics considerably.
Shared Decision-Making
Unlike advisory roles or consultation roles where patients might be consulted but don't have a decisive say, patient research partners are involved in joint decision-making processes, affecting the direction of the research itself. Also, patient research partners get to see the research evolve and get their hands dirty on different aspects of the research - this could include writing publications, analyzing data, conducting interviews, development of interview guides or resources, presenting the research at conferences.
Impact on Research and Outcomes
Relevant Research Questions
By involving patient research partners, research questions become more focused on what matters to patients, increasing the likelihood that the research will be useful and adopted in real-world healthcare.
Improved Communication
Patient research partners can help translate scientific jargon into language that's understandable for the general public, enhancing the dissemination and impact of research findings.
Challenges and Considerations
Time and Training
Being a patient research partner may require a commitment of time and often some training depending on how you might want to be involved in the project. There may also be financial constraints or other barriers that can limit meaningful engagement.
Ethical Concerns
Balancing the relationship between researchers and patient partners, especially concerning data privacy and consent, requires careful ethical considerations.
Just the beginning
The role of the patient research partner is revolutionizing healthcare research by introducing the invaluable perspective of lived experience. While there are challenges to be addressed, the benefits, particularly in generating more relevant and impactful research, far outweigh the downsides. As healthcare continues to evolve, the voice of the patient is becoming impossible to ignore — and that's a good thing for all of us.
