CONTENTS:

Speakers have kindly provided responses to questions submitted by conference participants during the Discussion session that did not get an opportunity to be discussed.

1. How can patient-oriented research be applied in the area of prevention, especially in the setting of lifestyle interventions in healthy individuals (primary prevention)?

Yes, patient-oriented research can be applied in the area of prevention. It is even easier than in emergency situations.

2. There is heavy emphasis on patients and engaging them (especially from the funders). How important is it to have broader engagement than that, especially in the context of the development and delivery of behavioural interventions?

Engagement of other stakeholders (beyond patients) is of course important, particularly if they are expected to play an active role in behavioral intervention implementation (eg. motivational interviews conducted with clinicians). The principles for engagement with patients, clinicians and policymakers are similar in many aspects (see for example this systematic review on clinician engagement in research). However, many issues are specific or more acute to consider for successful patient engagement (eg. recognizing legitimacy of experiential knowledge, acknowledging power differences, addressing jargon, organizational and financial support).

3. Do you think your approaches would be as applicable to other groups who are generally disenfranchised from the healthcare process?

There is a vast literature on engagement with a diversity of people. A useful practical starting point is from INVOLVE. Diversity and inclusion: What’s it about and why is it important for public involvement in research

4. Apart from the language barriers, how could we have other potential factors like religious or underlying cultural aspects addressed?

Work with the community, look for champions from inside the communities who can walk you through the process ; train your research team members to more flexibility ; and when applicable have a diverse research team, including researchers of these communities. Finally continuously assess your approach to adjust on time and ensure you maintain trust.

5. Is lobbying for the health of migrant groups more effective coming from people who are second-generation immigrants or a mix?

Maybe a mix. Both groups do not have the same approach. Second generation sometimes seem more “determined”. These approaches need to be investigated.

6. There may be many people who feel anxious about engaging patients fully in the research process. Can you talk a little bit about some of your positive and negative experiences as well as how you got started?

Positive experiences : it helps you to save time, instead of going too far in the research process before coming back. Very enriching. Researchers understand.

7. What advice can you offer researchers seeking to develop effective patient recruitment strategies? How important are clinicians to this process in your view?

It is useful to distinguish the identification and selection stage of the recruitment process. Clinicians (as well as patient associations and community organizations) can have a role in identifying potential patient and community partners to engage in research projects. In our experience, selection should however not be left to clinicians alone. We usually conduct the selection process as dyads (patient and research recruiters), based on explicit competency criteria, including: 1) relevant lived experience in relation with the project; 2) ability to work collaboratively (this is also important for the research partner); 3) role-specific competencies (eg. patient partners engaged to community research results may have a different skill set than those engaged in recruiting research participants or reviewing consent documents).

8. How can we find common ground in behavioral interventions when people in the community are not willing to find it?

There are three potential issues in this question statement: 1) Common ground is a two-way street and it first starts with researchers being willing to adapt their research objectives and approach in response to a deeper understanding of patient and community perspective; 2) This said, there are situations where patient and community partners engage with research in order to “prove” preconceived assumptions rather than test them. In these cases, long-term engagement may be difficult; and 3) Finally, we should keep in mind that “productive conflict” is part of the game and is expected as part of successful partnership journeys. We don’t always agree together and this is why we engage with people with a diversity of experience and expertise.

9. Is it reasonable to seek funding specifically aimed to support patient engagement? I’m thinking notably of the work involved in properly translating the goals of the research in ways/words that can allow patients to really own/understand them (and conceivably become a recruitment partner within their patient communities)?

This is not only reasonable, but often a precondition to create a supportive environment for engagement. This is part of best-practice recommendations by many research funding organizations, including CIHR (Canada), NIHR/INVOLVE (UK), PCORI (USA).

10. Do you have any insights about patient engagement in research within low and middle income settings?

Yes, a lot of initiative that are do not necessarily use the same terminology. A lot of participatory projects. Different levels of engagements mostly information and consultation. Lack of systematization of such approaches in research or in care.