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?
The importance of measuring the impact of patient partnerships in research
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.
Measuring Impact of Partnership - Nicolas
And I think, and this is based on the premise that including patients’ voice in research will improve it. And that’s not really proven yet, solidly. I mean I know there are researchers who are very insistent on that, that we have proof, but we don’t. What we’re seeing is that it changes research for sure. It’s not the same anymore, but it... Does it make it better? We don’t know.
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.”
What to consider when measuring the impact of patient-researcher partnerships?
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.
Measuring Impact of Partnership - Zarah
And so I think what ends up happening is people don’t report on that part of their research, it’s we’re trying to get the results of our trial out, and so we put that, we publish that, we create a manuscript and that’s published, but we don’t do a very good job of reporting our patient engagement method.
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.
Measuring Impact of Partnership - Zarah 2
Yeah. It's part of what we’re trying to study right now, actually. It’s an interesting field, again, for so many reasons, but it’s not like any other way that we study rigour or validity, you know, how do you study the validity of a patient experience? It’s not really something that we have developed, or I don’t even know if we can work on developing it because it is such a unique thing.
One patient partner shared her thoughts about how researchers could consider whether the partnership was a positive and productive experience for all involved.
Measuring Impact of Partnership - Louise
Well I measure impact in a few ways. And I - this is part of what I teach also at the boot camp ... how do you know you've had a successful partnership? Well one is you actually stay for the whole project. If your partner's actually stick and stay for the whole project something good happened there. If you're wanting to work together again. That to me is a good partnership.
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.
Measuring Impact of Partnership - Wendy
Well I think that it’s – I think that the impact of the partnership is a really important question and I think with Indigenous communities there’s starting to be work being done on how can the partnerships be developed and evolved and sustained in mutually positive ways, so there is some work being done on that, I think we still have a lot of work to do; so as far as – so I think that those are
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.”
How have researchers tried to measure the impact of patient-researcher partnerships?
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.
Measuring Impact of Partnership - Nicole
Yeah, so we did three evaluation surveys which was recommended to us by our SPOR Support person; so we did one at the beginning, in the middle and at the end and it was very positive. We had everybody complete them who worked together, and yeah, it showed - I think it showed overall all the contributions that were made to our research by our patient partners.
Measuring Impact of Partnership - Annette
We're also measuring patient engagement; so again we're very committed to contributing to the science of patient engagement, particularly in child health research, particularly from a network perspective because a lot of the literature is focusing on research projects, but this is - you know it's a whole different scale when you're talking about a network with like multiple projects and activit
Others mentioned that they have started to build in evaluations of the partnership process into grant applications.
Measuring Impact of Partnership - Katie
I really try hard not to be just ticking the box of having them in the room, but really checking in with them. I don’t do any kind of formal surveys or evaluation of that per se, it’s more just a gut feeling I guess and trying to create a safe space where if they felt something wasn’t going how they assumed it would, then we could talk about that.