We asked participants to share their thoughts about measuring the impact of patient partnerships in research. In some cases, participants reflected more broadly about the topic, while others discussed specific considerations that researchers should keep in mind. Some also shared their own experiences of attempting to measure the impact of partnering with patients in research. Overall, it seemed that this topic is a work in progress and will benefit from further research. Please refer to our Resource page for available information and tools about this topic.
Please feel free to jump to the following sections:
- The importance of measuring the impact of patient partnerships in research
- What to consider when measuring the impact of patient-researcher partnerships?
- How have researchers tried to measure the impact of patient-researcher partnerships?
Many of the researchers we spoke to indicated just how common patient-researcher partnerships have become and acknowledged that this trend may well change the way research is conducted. For example, a researcher may revise study objectives to be more relevant for the patient population being studied based on patient partner feedback. Although many researchers and patients attested to the importance of including patient partners in research, many also acknowledged that we don’t truly know the extent of the impact of these partnerships on the research process, study results, and/or patient outcomes.
Many others indicated their strong support for patient engagement in research as partners, irrespective of whether the impact of these partnerships has yet been documented in a formal way. For example, when Esther was asked if her team had given any thought to measuring the impact of partnerships, she replied with the following: “Well, that's time and resources constricted. We are very busy trying to achieve the objectives that we have already. This is not an objective on any of, of any of the grants that we are working under currently. So, no, not directly. We feel for us, personally, it's an important impact. But, if it really changes our results, honestly, I don't know. But, I wouldn't change it, even if it doesn't. I just like, I like, doing this a lot better than I did before. It's just much more meaningful.”
Researchers that we interviewed almost all agreed that the impact of partnerships should be evaluated and that it was something they were actively thinking about; however, they were uncertain about how to exactly evaluate the partnership process. Some participants highlighted that although many researchers are engaging with patient partners in research, this process is not always well studied or documented, which makes it more challenging to implement.
Some participants were also quick to point out that researchers must be careful not to focus on evaluating patient partner roles when evaluating partnerships, and instead focus on evaluation of the partnership process itself. For example, Janet says: “ Well and I think the other issue around measuring the impact is that the team didn't come together agreeing to be evaluated as a team. And so it's a little bit of an ethics issue because they've agreed to be a team to conduct a study and they have ethics approval to conduct the study, but not sort of the reciprocal which is evaluation of their performance as part of the team.”
Zarah also highlighted the need to focus not on the patient role, but in this case, on the impact of partnership on research.
One patient partner shared her thoughts about how researchers could consider whether the partnership was a positive and productive experience for all involved.
Other participants suggested that researchers should consider if patient partners' involvement has contributed to making the research more relevant for the patient population or community being studied.
More broadly, some participants said that it would be interesting to observe if research in any one field has evolved over time due to the influence of partnerships. For example, Maureen, a patient partner, reflected that perhaps different research questions are being asked now in certain fields compared to years ago based on feedback from patient partners: “ Yeah. So I think it's easy to measure the impact - well not easy, but it's more feasible to measure the impact like if you're looking at a certain research and the directions the research has taken, as to where maybe that in 10 years previously no-one looked at that and now they're looking at that outcome. I think that's one measure, and that’s because in those years we have new players at the table.”
Although many researchers discussed that they are only starting to think about how to evaluate partnerships, a few participants shared examples of how researchers are attempting to measure process and impact.
Others mentioned that they have started to build in evaluations of the partnership process into grant applications.