This blog post is part of a series about our PCORI Engagement Award - we will post updates on our discussions every few months, so you can follow along!
Last year, we shared that Generation Patient received an Engagement Award from PCORI (Patient-Centered Outcomes Research Institute) to “engage in patient-centered outcomes research and comparative effectiveness research (PCOR/CER) to assess peer support as a crucial intervention for young adults with chronic conditions.”
Want to learn more about what this means? Interested in the work we’re doing? Read on! :)
What are “patient-centered outcomes research” and “comparative effectiveness research”?
Simply put, patient-centered outcomes research (PCOR) addresses issues that patients have concerns about or are interested in rather than focusing just on the interests of researchers or medical providers. In PCOR, patients are included in every step of the research process—we’re not just the “test subjects” but also help design research questions, create studies, and discuss results!
Comparative effectiveness research (CER) looks at multiple ways of addressing a problem and compares how effective each solution is. For example, comparative effectiveness research might be helpful if we want to know if treatment A or treatment B is better for treating a specific medical issue. Or, we might want to know if a specific action (ex: watering your plants every week) leads to better outcomes (healthier plants) when compared to another action (watering every 2 weeks).
What is an “intervention”?
In clinical research, the specific action or treatment that you’re studying (often to see if it helps improve health/well-being in some way) is referred to as the intervention. So, in the above examples, our interventions were “taking treatment A” or “watering the plants once a week.”
What is Peer Support?
There are a variety of different definitions of peer support - for our purposes, peer support refers to supportive connections between young adults living with similar chronic conditions/medical disabilities or navigating similar life challenges. Peer support can take many different shapes, such as:
talking one-on-one with a friend who has the same diagnosis
joining a virtual group to talk through different topics
or even connecting with other folks in the chronic illness community from around the globe via social media!
While there are many benefits to other forms of support (like therapy, hospital-based groups, etc.), we think peer support is special! There’s something inherently powerful about talking with others who understand what you’re going through and have been through similar things. At GP, one of the ways we define ‘peer support groups’ is based on who leads/creates these spaces - which is why all our groups are run by members of our community (young adults living with chronic conditions).
So what does this mean? Putting the pieces together:
We’re interested in highlighting the importance of peer support *as an intervention* for young adults with chronic conditions. Essentially, we want to show that peer support is an important way to address some of the challenges that young adults with chronic conditions face!
Don’t we already know peer support is helpful?? Why is this research important, and what are you going to do with this research?
While there is existing research that shows that young adults with chronic conditions could benefit from increased mental, emotional, and social support in general (Nearchou et al., 2019), there is not much out there examining how peer support can be beneficial specifically!
Even if we already know (from personal experience) how important peer support can be, it’s also important to have research that shows the impact of peer support as an intervention. Peer support programs are generally seen by the medical field as “extra” services: they are nice to offer patients if the resources exist, but are not seen as a critical aspect of treatment. But in our experience as young adult patients, peer support is a HUGE part of addressing our mental, emotional, and social well-being. If we can point to research that shows peer support is clinically beneficial (has measurable/observable benefits) for patients, this helps show why medical systems should invest resources and funding into these types of programs.
Right now, we’re working on showing WHY there’s a need for this research, laying out the current challenges in doing this research, and looking at opportunities to further develop this research.
Interested in following along with our roundtable discussions? Stay tuned for more updates on some of the research we’ve reviewed so far and some of our key takeaways from these meetings!