Table 5 Impacts of patient-oriented research reported by CHILD-BRIGHT patient-partners and researchers
From: Patient engagement in a national research network: barriers, facilitators, and impacts
Impacts of patient-oriented research reported by | |
|---|---|
Patient-partners (total number of utterances = 97a) | Researchers (total number of utterances = 100b) |
1. Projects are better aligned with patient-partner priorities and lived experiences (25 utterances) “This particular project has been really lovely in the way that they have really taken all of our input and our perspectives, because the end user is folks like us.” | 1. Projects are better aligned with patient-partner priorities and lived experiences (32 utterances) “It ensures that the research is practically oriented and applied, and the language used is simple. There are often family members or self-advocates that are really pushing for the research to be used, and relevant and asking pertinent questions. So I think it does change the tone, for sure.” |
2. Patient-partners are provided with learning opportunities (22 utterances) (e.g., co-present at conferences, attend patient-engagement workshops, learn about others’ circumstances and health conditions) “And I think sometimes it comes down to really simplistic things With one project I was with previously, we all got together at a research conference. It was nice they said, ‘we want you to present the poster’. And I thought that was just really, wonderful in the sense of saying, ‘well you’re a part of the team, you can explain as well.” | 2. Co-creation and collaboration among researchers, patient-partners, and families increases (27 utterances) “Having the patient-partners very much involved makes any strategic decisions more realistic, more impactful. So, I think for strategic decisions, having patient-partners is really important to make sure that the patient experience and patient expertise is really influencing our decision making.” |
3. Co-creation and collaboration among researchers, patient-partners, and families increases (18 utterances) “I think that a lot of how I frame things [as a parent-partner], or how I look at things has had a really big impact in how we're reporting, how we're measuring, how we're designing the program…” | 3. Knowledge translation is facilitated by patient-partner input (11 utterances) “The incredible students that we’ve had have been able to listen to the parents’ feedback, take very specific feedback and turn it into resources for families.” |
4. Knowledge translation is facilitated by patient-partner input (10 utterances) “ We're redesigning a program that was made for a certain cohort of the disabled population and now we're rejigging it so the videos have to change, some of the language has to change […] because it’s for different disabilities, for children or for parents of children with different kind of disability.” | 4. Members can learn about patient-oriented research together (6 utterances) “I think we try to be open as much as possible and did see it as a learning process together and I think that was appreciated that we were open in that regards.” |
5. Members can meet others, share experiences, increase knowledge and know they are not alone (8 utterances) “I would count several of the parent advisors as friends now, or certainly colleagues that I can reach out to on issues not related to the study. So yes, it has enhanced my knowledge of childhood disability… I have been able to interact with parents with kids who have different kinds of disabilities or comorbidities and also different challenges…. I’ve had the chance to meet with some parents as well, which I’m very happy about.” | 5. The voices of patient-partners are amplified (5 utterances) “By having these parents who are willing—they're very busy but, they're willing because they think it's important to have their voices heard and to speak on behalf of other parents—I think that having that opportunity is really helpful for the study.” |