Engaging patients to shape the research of the future
Patient-centric research is the way of the future, but patients may see clinical research as mysterious or intimidating, and research organisations may see engaging patients as difficult. Here, Stephanie Ernst describes some approaches researchers can use to find patient experts and connect and interact with them successfully to shape the research of the future
By Stephanie Ernst, TAPS nerd and patient expert
The mysterious world of clinical research
With patient engagement in clinical research becoming more common and a topic of interest, researchers need to discuss ways to engage patients in research development.
For many, the world of clinical research and trials is a mystery, with many misunderstandings about how things work and how research topics are created and established. While researchers are familiar with the protocols and strict regulations on clinical trials involving human subjects, the average person is not. They do not always see that many years of research have already been carried out when a trial is ready for participants. Many legal requirements have to be fulfilled, and the reviews are done by ethics committees have already been completed.
The mystery exists because these steps are often completed behind the scenes before patient recruitment is even considered. When patients come to the first stages of the research, they often don’t realise that the research can already be past the halfway point. This means that patients may not connect readily with the research and may not fully understand the purpose.
Regulators also now expect that patients are engaged in the design of trials from early on, actively helping to plan and consulting on all aspects. When patients are involved in establishing research and trials, they can feel connected to it and feel their contributions have a purpose and are valued.
But how do you recruit and engage patients within your research? It may feel like a difficult task, but it doesn’t have to be.
It starts with connecting
Patient organisations are a wealth of information and valuable resource. They’re invested and engaged in the latest research—because they’re the first point of contact outside of professionals for many newly diagnosed people. Their strong beliefs in advocating for appropriate care, passion and real-life experience make them the ideal resource.
There are also mutual benefits here, as patient groups crave information and look for experts to turn to for updates and data. They also generally have active communities where they share and discuss their concerns and desires for future research. Consulting with the community can help you find key topics that patients are interested in and create opportunities to develop new research topics, thus connecting patients to research.
Walking patient groups through things like establishing a trial or explaining the process behind research topics can be beneficial and helps them know that the processes are ultimately there to protect them. By extension, when you establish the goal of your research, consult with the patient group and check their alignment with the plans. They’re actively engaged in these outcomes and will be able to provide feedback and promote the research. This means a broader connection to the project and a wider reach with recruitment and feedback.
Level the playing field
It can be intimidating for patients to be approached by researchers and doctors—this can come from negative experiences, but can also come from just classic impostor syndrome: “Why are they asking me? Don’t you have all the answers?”
This is where it’s essential to create that equal ground—these patients are often the experts by their own experience, but they may not have the confidence in their knowledge and their ability to speak on the same level.
When a working group or consultation is established, communicate as equals. It seems simple enough, but we tend to slip into technical jargon when we’re not conscious of it. Check for understanding.
Another regulatory requirement is for plain language summaries. Your patient experts are the ideal team to give the necessary feedback because they are your target audience. (PS: Don’t forget that feedback also can happen on illustrations—a valuable visual aid to understanding complex ideas.)
It’s about breaking down the barriers and establishing a good working relationship, because both of you are bringing assets to the table. You have a similar end goal—research to improve understanding and better outcomes.
Being in the know
When looking at patient organisations to connect with, look for the ones actively engaging with the research world, either through promoting new studies or sharing research. These are the ones that are hungry for information and are willing to connect.
It can be as simple as consulting with them about issues faced by families, offering them some resources, asking for input on ideas, or sharing regular updates on research—this can feel like being part of a secret club!
These interactions can boost the sharing of upcoming research, help create recruitment opportunities and even get answers on surveys for data analysis. In turn, you can share their experiences on your websites and social media, et cetera. This can help patients connect to your goals and make them feel like their contribution is valued. In turn, they’ll share their stories with the world (or their communities) and bring in a personal element.
Share your successes, milestones and breakthroughs with your patient groups. Let them into your research world and you’ll be surprised how much this can help your goals.
So… where to find patient experts?
I love this topic because they’re literally sitting under your nose. Google searches and social media searches will guide you to the more active communities—and you’ll be able to gauge from there if they’re what you’re looking for. Make contact with community leaders and organise an informal chat. Trust me, they’re going to be excited and flattered to talk.
But you can also find them in the patient who asks if there’s anything they can ever do… the timing may not be right then, but you can develop a simple form that captures their details and reach out later via email. It can be something like inviting them to share their story at a symposium or a quote for a news article. By extension, you can encourage them to send photographs and updates about progress—it’s really a wonderful feeling to have that sense that even after many years your team is still invested and engaged in your story.
In return, these patients can help with the development of research and be a connection point for other patients. Peer support is valuable, especially when dealing with a rare diagnosis, as finding someone who has walked a similar path can be challenging.
A simple check-in or offering access to follow-up support can be a moment that leads to a great connection.
The world of research is evolving and has moved from the clinical approach to a much more human aspect. Patient-centric research is the way of the future, and the role of patient experts is becoming more and more ingrained in outcomes.
Engaging with patient groups can be beneficial to research organisations, and connection and collaboration can ultimately improve outcomes and benefit human health. The future of research lies in breaking down the barriers and engaging patients to help with research.
Acknowledgements: The author would like to thank the following people: Eric Klaver for his assistance and help in understanding regulatory processes in clinical research, Dr Lotta Herling for the inspiration and encouragement to write this article after our meeting, and finally, the Fetal Therapy Team at the LUMC who fuelled this patient expert’s passion to engage in research, and have embraced every principle I have written about in this article.