Editor’s Picks 2022: Patient and Public Involvement Research

In June’s blog post we highlighted some of BMJ Open’s most impactful papers of 2022 so far based on Altmetric score, which collates mentions of research articles across various sources including news reports, blogs and social media platforms. But Altmetric scores only pick up one facet of research impact. Another important way of making clinical research more impactful is by involving patients and the public as partners in the design and conduct of the research, and examining research questions and outcomes that matter to patients. In this month’s post we highlight some of the articles that BMJ Open has published this year on Patient and Public Involvement (PPI).

 

How common is PPI in health research?

Whilst PPI has been endorsed and promoted by a range of governments and funding bodies, there has been surprisingly little research into what extent PPI has actually been taken up and adopted by health researchers. In this study from the University of Exeter, funded by the UK National Institute for Health Research, researchers examined 3000 BMJ Open papers looking at the frequency of PPI inclusion across geographical location, study method, topic and funder. These analyses are possible because, since March 2018, BMJ Open has mandated a Patient and Public Involvement statement for all submissions, including studies where no PPI took place. The authors found PPI inclusion varied widely across categories, comprising 44.5% of all UK papers compared to just 3.4% of papers from China. Mixed-methods studies and mental health research had the highest percentage of PPI inclusion. Overall, around one in five papers in the sample reported including PPI, suggesting more work needs to be done to increase PPI inclusion in health research.

 

Lessons learned from a James Lind Alliance Partnership

The James Lind Alliance (JLA) is a UK-based initiative set up in 2004 to to bring together patients, carers and front-line clinicians to identify and prioritise research uncertainties in particular fields of medicine through a Priority Setting Partnership (PSP). In this communication article, Jongsma and Milota reflect on their experiences of using the JLA PSP method for juvenile idiopathic arthritis, highlighting the importance of having specific strategies and plans in place for maximising the dialogic processes in a PSP. Three key areas are discussed: (1) the importance of facilitation and maintaining trust; (2) optimising the balance between inclusivity and innovation, and (3) reflecting on and reacting to positionality of participants.

 

A James Lind Alliance priority setting partnership for medically not yet explained symptoms

Writing in The BMJ this year, intensive care consultant Matt Morgan noted that the old mantra of “no news is good news” does not apply to patients who are told they have ‘medically not yet explained symptoms’ (MNYES). On the contrary, these patients experience continuous uncertainty and worry from not knowing what their diagnosis is. The prevalence of MNYES is high, too, representing up to 30% of presentations in primary care and internal medicine settings. For the first time, a study by van der Feltz-Cornelis and colleagues carried out a JLA PSP of medically not yet explained symptoms involving over 400 UK patients, caregivers and clinicians. The top 10 unanswered research questions covered treatment strategies, personalisation of treatment, collaborative care pathways, training for clinicians and outcomes that matter to patients. The top unanswered research question was: “What are the most effective treatment strategies for different symptoms of MNYES?”

 

A priority setting partnership for Parkinson’s research: Do socioeconomic factors affect the results?

Whilst priority setting partnerships have made great strides towards making research more meaningful to patients, no research to date has examined to what extent the prioritisation of these questions remain the same across different socioeconomic groups. Perhaps the results of PSPs are biased towards the priorities of patients and caregivers from wealthier or more educated backgrounds? In this study, Bowring and colleagues examined this question in a PSP for the management of Parkinson’s involving people with Parkinson’s, relatives and healthcare professionals from the UK, Germany and Luxembourg. Reassuringly, they found no substantial evidence that socioeconomic factors affected the top priority but there was an observable difference between the prioritisation of other questions in the top 10. The most important question identified in the majority of analyses was: “What is the best type and dose of exercise (physiotherapy) for improving muscle strength, flexibility, fitness, balance and function in people with Parkinson’s?”

 

Developing an intervention to increase parental vaccine confidence and young people’s access to the universal HPV vaccination programme in England

Our final editor’s pick is a study where PPI is a central part of the study’s design. Fisher and colleagues present their protocol for the development of an intervention to improve HPV vaccine confidence and access that is co-produced with young people and parents. PPI was included in multiple areas of the design, including the recruitment strategy, the study materials, the initial strategy for the multicomponent intervention and development of the communication materials for disseminating and translating the research outputs.

 

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