In yesterday’s Mental Elf blog, I summarised a qualitative study exploring young people’s views towards using technology to detect worsening of mental health problems (Dewa et al, 2019).
The study itself was novel due to the collaborative partnership between young people (co-researchers) and academics; from study design to dissemination. The practice of public and patient involvement (PPI) has received increasing attention over the last few years. PPI has been defined as “an active partnership between the public and researchers in the research process” and national standards and guidelines have been developed to help promote non-tokenistic involvement in research (INVOLVE).
However, PPI can vary significantly between studies. Involvement in some cases may be limited to consultative work, whereby individuals are asked to review study documents or comment on analyses. Conversely, involvement can be collaborative in nature, where studies are co-produced by individuals who contribute towards multiple areas including idea generation, funding and ethics applications, project management, data collection and analysis, evaluation and dissemination (NIHR, 2014).
INVOLVE (2019) have produced five principles of co-production, which the authors use as an evaluation framework in the current paper:
- Sharing of power
- Including all perspectives and skills
- Respecting and valuing knowledge of all those working together on the research
- Reciprocity
- Building and maintaining relationships
Some studies have highlighted the positive impact of co-production on findings (Malterud & Elvbakken, 2020) and many now use the GRIPP-2 Checklist (Staniszewska et al., 2017) to report involvement. However, reporting methods often fail to include in-depth qualitative reflections from researchers and co-researchers.
Therefore, the aims of this article (Dewa et al., 2020) were to:
- Describe how a recently published qualitative study (Dewa et al., 2019), blogged about yesterday on the Mental Elf, followed the principles of co‐production and;
- Describe the impact of the co-production process on the research, researchers and co-researchers by analysing the reflections of those involved.
Increasing attention has been given to the involvement of people with lived experience of mental health problems from research design to dissemination.
Methods
Seven young people were recruited via the research charity The McPin Foundation and Twitter to become part of a Young Person Advisory Group (YPAG). YPAG members were asked to choose whether they would like to be involved in data collection and/or analysis, management or dissemination.
Three co‐researchers received training in conducting interviews with people who experience mental health problems and in coding interview transcripts over the course of two days. The co-researchers received payment for attending training.
Co-researcher involvement in participant interviews followed a co-produced working model:
- A co-researcher shadowed the lead researcher (with the participant’s consent)
- The co-researcher then conducted an interview with the lead researcher present
- The co-researcher then conducted an interview alone.
The results from the interviews are described in my previous blog. Reflections and experiences of the researchers and co-researchers were recorded throughout the project.
Results
Experiences, reflections and outcomes of co-production from design to dissemination were described against the principles of co-production. This was followed by authors reports on reflections that captured the impact on the research, the researchers and co-researchers.
Principles of co-production
1. Sharing of power
Steps were taken to help the team get to know each other. Specifically, the researchers and PPI lead explained their own experiences of mental health problems and the co-researchers then shared information about theirs, thus creating a safe space.
2. Including all perspectives and skills
The authors described a clear strategy to promote inclusivity in the YPAG membership and were successful in appointing a diverse group of young people based on mental health problems experienced, ethnicity, current occupation and physical health problems. However, the researchers were advised by a psychiatrist to exclude individuals experiencing severe current mental health difficulties because of ethical and safeguarding considerations.
3. Respecting and valuing knowledge
The authors reflected that respecting and valuing each other came naturally for them due to similar values and characteristics. Such respect was demonstrated through agreeing on meeting principles, openly sharing personal experiences, and spending time to get to know each other before and after meetings.
4. Reciprocity
Importantly, the authors highlighted how both the researchers and co-researchers benefitted from the collaborative process. For co-researchers, this included, but was not limited to, learning new skills, gaining knowledge, increasing confidence, networking, and financial compensation. The researchers were able to build on their knowledge of PPI, gain invaluable experience of co-producing a research project and enrich their networks.
5. Building and maintaining relationships
Relationships were built through taking time to get to know each other through an introductory face-to-face meeting and starting each meeting with an informal chat. WhatsApp messages were responded to quickly and continued throughout the lifespan of the project.
Reporting reflections that capture the impact on the research, the researchers and co-researchers
The authors reflected that the involvement of co-researchers in designing the study led to a topic guide which was easy to understand and appropriate and relevant for the audience. During the data collection phase, co-researchers were able to build rapport quickly with participants and pick up on specific terminology that may have been missed by the lead researcher. However, due to shared personal experiences, questions from the co-researchers could sometimes be leading, but this improved in subsequent interviews following self-reflection and feedback.
A thematic map prior to and after co-researcher input was also provided to demonstrate how the thematic map evolved during the analytical process through the involvement of co-researchers. For example, subthemes were more neutrally phrased to reflect both the negative and positive aspects of each subtheme.
The researchers used the NIHR INVOLVE principles of co-production to describe how the study was co-produced with young people.
Conclusions
Researchers have highlighted that lack of member continuity can limit the scope of PPI; however, this study was relatively successful in maintaining YPAG membership throughout the lifecycle of the project. Such member continuity allowed for meaningful rather than tokenistic involvement.
Whilst every effort was made to coproduce the study, the authors acknowledged that true co-production takes time and is financially burdensome. Due to time and budget constraints and the general academic environment, the lead researcher was responsible for the YPAG, rather than members of the YPAG actively leading and organising activities.
Finally, whilst striving for co-production came with challenges, using the principles of co-production helped capture its impact on the researchers, co-researchers and overall research project.
Member continuity throughout the research lifecycle helped promote meaningful involvement.
Strengths and limitations
The authors have provided a rich description of their experiences of co-producing a qualitative study, including reflections from both researchers and co-researchers.
It was a strength that the authors included examples of how young people changed and shaped the study procedures and findings. Too often researchers report that PPI groups were formed to develop study materials and help with analyses, but fail to specify how changes were made and the project developed as a direct result. Through this paper, we are able to see directly how co-development was fundamental to the study procedures and findings.
Co-production was evaluated by using questionnaires, free-text responses and face-to-face discussions with two co-researchers. However, other young people from the YPAG were not involved in the evaluations. Although the researchers reflect on their experiences of the involvement of YPAG members, it would have also been interesting to understand their own reflections, particularly in comparison with the more involved co-researchers. The questionnaire used is also not included as an appendix, which could be a valuable tool for others looking to evaluate involvement in research, particularly with young people.
The authors open and honest reflections of both the successes and challenges of the co-production process could help shape collaborative working in future projects.
Implications for practice
Based on their experiences of co-production, the authors outlined the following recommendations for ensuring collaborative working. Such approaches could also be used by mental healthcare staff who are looking to ensure meaningful involvement of people with lived experience in service delivery and evaluation:
- Appropriate clinical support must be offered for young people when working on research projects
- Whilst there is a need for researchers to act in a ‘leader’ role, honorary researcher status should be provided to co-researchers. Involving young people in the co-delivery and co-design of training may also help to reduce power restraints
- To build rapport within a team:
- match the person to the role and make sure that members are fully informed about what each role entails
- meet at a time and place that is appropriate for members
- create an informal and light-hearted environment from the outset
- set aside time to get to know each other outside meeting times
- bring refreshments to help create a good social experience and maintain concentration
- create a safe space for open discussion
- allow for breaks and fresh air and facilitate interactive activities
- ensure strong communication and provide support
- request and respond to feedback
- Use the INVOLVE calculator for PPI costings but also request additional funds to allow for unanticipated expenditure during the PPI process
- Analysis meetings between co-researchers and researchers took place prior to the COVID-19 pandemic, but were conducted virtually via Skype. Given the move towards virtual public and patient involvement meetings to combat issues regarding social distancing, further reflections could have been provided about the use of virtual software to help inform these processes for researchers starting out in virtual PPI.
Importantly the lead researcher highlighted the experience “has always made me want to take time to do meaningful PPI!”. Hopefully this paper will inspire others to do the same.
Young people must be paid for their contributions to research studies. The INVOLVE calculator for PPI is a good starting point.
Statement of interests
None.
Links
Primary paper
Dewa LH, Lawrence-Jones A, Crandell C, Jaques J, Pickles K, Lavelle M. et al. (2020). Reflections, impact and recommendations of a co‐produced qualitative study with young people who have experience of mental health difficulties. Health Expectations; doi: doi.org/10.1111/hex.13088
Other references
Dewa, L. H., Lavelle, M., Pickles, K., Kalorkoti, C., Jaques, J., Pappa, S., & Aylin, P. (2019). Young adults’ perceptions of using wearables, social media and other technologies to detect worsening mental health: A qualitative study. PloS One, 14(9), e0222655.
Malterud K, Tove Elvbakken K. (2020). Patients participating as co-researchers in health research: A systematic review of outcomes and experiences. Scandinavian Journal of Public Health; 48(6); doi: 10.1177/1403494819863514
National Institute for Health Research (2020). NIHR INVOLVE. Retrieved from: https://www.invo.org.uk/
National Institute for Health Research (2014). Patient and public involvement in health and social care research.
NIHR INVOLVE (2019). Guidance on co-producing a research project. Retrieved from: https://www.invo.org.uk/wp-content/uploads/2019/04/Copro_Guidance_Feb19.pdf
NIHR INVOLVE (2020). Involvement cost calculator. Retrieved from: https://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/involvement-cost-calculator/
Staniszewska S, Seers K, Altman DG, Denegri S, Littlejohns P, Thomas V. (2017) GRIPP2 reporting checklists: tools to improve reporting of public and patient involvement in research. BMJ; 358; doi: doi.org/10.1136/bmj.j3453
Photo credits
- Photo by Clay Banks on Unsplash
- Photo by Jason Leung on Unsplash
- Photo by Brooke Cagle on Unsplash
- Photo by Nick Fewings on Unsplash
- Photo by Laurenz Kleinheider on Unsplash
- Photo by Micheile Henderson on Unsplash
