Patient Engagement in Health Research: Perspectives from Patient Participants

Round 1

Reviewer 1 Report

This paper explores the implications perceived by the patient involved in the Patient Advisory committee of a research project in Canada. The area of research is very interesting and potentially useful and the authors clearly explain the findings of the analysis. However, there some points that could be further elaborated to improve the paper:

- there is no clear explanation of the role of the authors (several or all of them) in the project. Are they all members of the PAC? The contribution of the authors in the paper and in the PAC should be explained. There are paragraphs that seemed a self-analysis of the role that some or all of them have played in the PAC (for instance, the first line of the discussion 'to reflect on our engagement'). I think is perfectly acceptable to self-explore the role and perceptions along the process but it should described clearly.

- if the authors, as it seems, are involved in the process, I think this should be described as potential bias in the discussion.

- external validity of the study is not discussed at all. Recommendations should be also explained using the patient engagement in other type of projects (this particular one was very adapted to this involvement).

- the issue of how to select patients is a major one. Here is described in a a section of results but, surprisingly, there are not discussion on this approach to recruitment (basically, connections to the team members) and its limitations. For instance, why not patients involved in patient organizations, or an effort to be more diverse in the composition of members. It is not easy to carry out this recruitment but some critical reflections would be required.

Author Response

 

Thank you for taking the time to review our manuscript and for making suggestions for improvement. Please see comments below on how we have addressed your comments:

- there is no clear explanation of the role of the authors (several or all of them) in the project. Are they all members of the PAC? The contribution of the authors in the paper and in the PAC should be explained. There are paragraphs that seemed a self-analysis of the role that some or all of them have played in the PAC (for instance, the first line of the discussion 'to reflect on our engagement'). I think is perfectly acceptable to self-explore the role and perceptions along the process but it should described clearly.

A line has been added in the introduction section to explicitly state that the authors of the paper are all members of the PAC. (line 63)

- if the authors, as it seems, are involved in the process, I think this should be described as potential bias in the discussion.

A limitations section has been added to the discussion and the potential bias of PAC members as co-authors has been added. (lines 381-391)

- external validity of the study is not discussed at all. Recommendations should be also explained using the patient engagement in other type of projects (this particular one was very adapted to this involvement).

External validity (transferability) has been added to the limitations section

- the issue of how to select patients is a major one. Here is described in a a section of results but, surprisingly, there are not discussion on this approach to recruitment (basically, connections to the team members) and its limitations. For instance, why not patients involved in patient organizations, or an effort to be more diverse in the composition of members. It is not easy to carry out this recruitment but some critical reflections would be required.

- We purposely kept the discussion of recruitment challenges in the results section, as we also agree that it was a limitation of the overall study and was one of the common themes identified in our reflective exercise. However, as a study limitation not within the control of the PAC members involved, we did not feel we are in a place to make recommendations on this since the research team did try various approaches without success. We focused our discussion/recommendations on things we feel could help enrich PE and the experience for PAC members involved on research teams.  

 

Reviewer 2 Report

Thank you for the opportunity of review this manuscript. The paper is well-written and could be interesting for the journal readers. I have some suggestions:

 

1.     Key words: Please be sure that these words be MeSH terms

 

2.     The methodology must be improved. The manuscript should follow the main guidelines for reporting qualitative research. The following references could be useful:

 

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357.

 

O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245-1251.

 

The authors should attach the file containing the checklist.

 

3.     Results: one of the quality criteria for qualitative research is that the participants’ voices must be well-represented. In this case, it should be important to show the main discourses according to the main findings (please make the correct description of the key informant).

 

4.     Discussion: Please mention the scope and limitations of this study. Also, establishing recommendations for research and practice is well acknowledged.

Author Response

Thank you for taking the time to review our manuscript and your suggestions for improvement. Please see comments below on how we have addressed your comments:

1. Key words: Please be sure that these words be MeSH terms

MeSH terms have been added

 

2. The methodology must be improved. The manuscript should follow the main guidelines for reporting qualitative research. The following references could be useful:

 

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357.

 

O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245-1251.

 

The authors should attach the file containing the checklist.

 

This article is a perspective piece written by members of a patient advisory committee (PAC) as a means of sharing reflections on our experiences as a PAC on a pan-Canadian, multidisciplinary research team that spanned 6 years. To capture our insights as a group, we used a qualitative approach to engage members in discussion; however, it is not meant to be a research study using more traditional qualitative methodology. Therefore, the COREQ checklist is not applicable in this case. More details have been added to the methodology section about our approach and a limitations section has been added to the discussion to clarify this point.

 

Results: one of the quality criteria for qualitative research is that the participants’ voices must be well-represented. In this case, it should be important to show the main discourses according to the main findings (please make the correct description of the key informant).

 

We have added a statement in the introduction to clarify that the authors of this article are all members of the PAC and participated in this reflective exercise. As mentioned above, this was not a qualitative research study, rather a reflective exercise using a qualitative approach. This article is unique in that the participant voices represented are those of the authors who are all PAC members. We devised a way to collect our thoughts as a group and come to a consensus to share our collective insights and recommendations with readers.

 

4. Discussion: Please mention the scope and limitations of this study. Also, establishing recommendations for research and practice is well acknowledged.

 

We have added a limitations section in the discussion.

Round 2

Reviewer 1 Report

Thanks to the authors for their answers. I have no frther comments

Reviewer 2 Report

No comments