Our next #ResNetSLT tweet-chat of 2019 will take place on Wednesday 25th September 7:30-8:30 (UK Time) and will be hosted by Milly Heelan and Katherine Broomfield.
The tweet-chat will be based around a topic of increasing international interest and a topic we have previously visited during a #ResNetSLT tweet chat – Patient and Public Involvement (PPI) in research. INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. For more information on INVOLVE’s work with PPI check out their website: https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/
A paper by Jo Brett and colleagues: “Mapping the impact of patient and public involvement on health and social care research: a systematic review” will help guide our chat. You can view the paper here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5060910/ OR read on for a short summary of the paper and thought provoking questions for you to consider before the chat …
The paper is a systematic review aiming to identify the impact of Patient and Public Involvement on health and social care research. The active involvement of service users in research is recognised to improve the way that research is prioritised, commissioned, carried out and disseminated. Therefore, it is important for us to understand the impact PPI makes on research and what should be prioritised for future research.
Themes emerging from the systematic review regarding the impacts of PPI were reported at different stages of research and split into beneficial and challenging impacts. They included:
- Beneficial impacts: Identifying relevant topics, prioritising topics, identifying important outcome measures, adapting academic language for a lay audience, assisting with recruitment methods, assisting with interpretation of themes and trends and supporting with dissemination.
- Challenging impacts: User views causing diversion from scientific methods, devaluing service user input, difficulty recruiting hard to reach groups, managing service users responses to allow fair representation, costly and timely aspects to conducting PPI.
The paper concluded that the current evidence base lacks detail in addressing the impact of PPI on research, making it difficult to synthesize. In addition, the evidence shows that improved planning, procedures and training in place for PPI, leads to the greater potential impact. A result of this paper was the introduction of guidance on reporting PPI, which can be viewed here: https://www.equator-network.org/reporting-guidelines/gripp2-reporting-checklists-tools-to-improve-reporting-of-patient-and-public-involvement-in-research/
And here for those thought provoking questions we will cover in the tweet chat:
- What examples do you have of including service users in research or for improvement of clinical services? (Did any of these stem from our previous tweet chat in November 2018?)
- Do any of the benefits or challenges of PPI input identified in this review resonate with your experiences of PPI?
- The paper describes accessing hard to reach groups as a challenge. How can we ensure that service users with communication difficulties or other hard to reach groups are included in PPI?
- The paper describes planning and training are important for successful PPI – Do you have any top tips to share with others who may be considering using PPI for the first time?
HERE’S THE SUMMARY OF THE CHAT …
The eighth ResNetSLT tweetchat of 2019 took place amidst the excitement of the RCSLT conference, on Wednesday 25th September. Thirteen participant Joined Milly Heelan and Katherine Broomfield to discuss: “Mapping the impact of patient and public involvement (PPI) on health and social care research: a systematic review”. The subsequent chat between 13 participants generated 145 tweets and made 166.174k impressions.
Tweeters described a range of situations in which they had used PPI. The Scottish Learning Difficulties Observatory (SLDO) has a current research project called “Research Voices” for which they have established a ‘Citizen’s Jury’. They have recruited 12 demographically representative participants from one specific health board area in Scotland. The jury will decide on the research questions and are being supported through Talking Mats. Talking Mats is also being used within the National Involvement Network Scotland to support inclusion. People also described how PPI has supported their individual research projects by providing advice and guidance. Where research proposals are still in development and individual applications in preparation accessing existing support groups, such as stroke groups and parent support groups, for feedback was considered helpful.
Some of the challenges of conducting PPI reported included developing groups for long term input when the population of interest had life-limiting conditions. There was also a discussion about the difficulties of securing funding for PPI in advance of securing funding for the research. People reported that funders often want to see examples of PPI input in research funding applications but that it was difficult to conduct meaningful PPI activities without having any funding. There was also difficulty in maintaining the momentum to continue PPI groups, particularly in clinical situation where competing priorities such as caseload demands over-shadowed PPI initiatives. Those who had experience of carrying out PPI were overwhelmingly positive about the benefits. People had used PPI successfully to inform participant information sheet development, to confirm the direction of research, to support ethics approvals and to prioritise service improvement projects.
Contributors to the chat had some fabulous examples of how to engage hard to reach groups, such as people with communication difficulties, in PPI. Several people had used visual tools such as Talking Mats. Writing keywords up on a board to support comprehension, using communication charts and producing aphasia-friendly agendas have helped others. Involving additional facilitators, such as therapy assistants, helped to ensure that all group members are able and encouraged to participate. One participant suggested involving students in service improvement projects involving PPI. This can provide a valuable experience for the students as well as gathering important input to quality improvement initiatives.
Finally, for some top tips when conducting PPI:
- Less training, more doing. Use activities to immerse participants in the topic rather than relying on discussion.
- Approach existing groups, such as support groups.
- ‘Strike while the iron is hot’ – especially in busy clinical settings. Take the opportunity to set up a focus group as soon as it materialises.
- Find funding – small pots may be available through local research networks e.g. Research Design Services (RDS).
- Create involvement where you can even if it’s not what you envisage.
- Nerves are good – they will help you be a good facilitator.
- Get someone in an observer role to identify barriers and think through solutions. Or video sessions if you can’t access an observer to catch up on anything you may have missed.
- Manage the environment. Don’t be afraid to move people and furniture, open and close windows/doors etc.
- Clearly establish the purpose of the group so everyone has shared expectations.
During the RCSLT conference, Anna Volkmer, Katherine Broomfield, Lauren Longhurst and Patrick Bates facilitated a workshop on PPI and also generated a list of top tips (see their flipchart picture below):
Here are some links to resources that you may find helpful:
https://unspokenvoicesproject.wordpress.com/2018/06/05/expert-collaboration/
