We asked participants to describe how being involved in a patient-researcher partnership had an impact on them personally and how they thought partnerships can impact patient care and experiences more generally. In this topic page, we highlight the types of impacts discussed by both researchers and patient partners. On a personal level, many participants discussed various opportunities for personal growth and how patient-researcher partnerships can influence changes in practice, with positive change for patient care and experience.
Feel free to jump to the following sections:
- Patient-researcher partnerships provide a new perspective
- Patient partners gained new insights, knowledge and skills
- Developing relationships and building trust with Indigenous communities
- Building teams and networks to support patient-researcher partnerships
- Patient involvement as partners in research can influence changes in practice
Both researchers and patient partners discussed the various ways in which they felt that partnering together provided new perspectives that they had not considered previously. For example, many researchers reflected that after hearing from their patient partners about their illness experiences, they had a better understanding of the patient population they hoped to positively impact with their work. Furthermore, some researchers discussed how their experience working with patient partners helped them see the value of patient contributions to research projects.
From the patient partner perspective, many told us that their engagement in research gave them an insider look into the world of researchers. Some mentioned that they had a better understanding of the research process and the challenges that researchers face in moving projects forward.
One caregiver discussed that they came to realize that there are many researchers who are passionate about their chosen field of work and many opportunities for researchers and patients to partner together to improve patient care and experience.
Many patient partners talked about the different learning opportunities that came out of their experience of being involved with research. Some examples included: learning how to navigate the healthcare system; learning new skills (e.g., public speaking); feeling more confident about voicing their opinion; understanding their illness better; and, seeing how useful sharing their personal experience can be for others.
Some researchers reflected on their experience partnering with Indigenous communities and shared how they have felt personally impacted by these relationships. These researchers spoke about how much they have learned about the work that needs to be done to build trust with Indigenous communities and develop research projects that are relevant to community needs.
Both researchers and patient partners talked about the important role that partnerships have in the creation of new networks and opportunities contributing to further support for patient-oriented research. Building networks can lead to more involvement of patient partners in research, connect individuals who may have never crossed paths otherwise, and contribute to research areas where patient engagement is less prominent.
Many patient partners and researchers spoke about how including the patient partner perspective in projects can contribute to change in health care research, policy and/or delivery. We heard many examples from patient partners regarding how their contributions to research will have a positive impact on improving patient care and experience.
Researchers also shared examples where patient partner feedback was used to help refine questionnaires, screening tools, communication material, and/or program development.