Carol Rhodes

Patient and public involvement in primary care research - an example of ensuring its sustainability

BackgroundThe international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects.MethodsThis paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes.ResultsWe use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships.ConclusionsThe paper concludes about the more general applicability of the Centre’s model for the long-term sustainability of PPI in research.

Sustaining patient and public involvement in research: A case study of a research centre

The literature on patient and public involvement (PPI) in research covers a wide range of topics. However, one area of investigation that appears under developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper presents a case study of PPI development in one primary care research centre in England, and its approach to making this sustainable using documentary sources and material from a formal evaluation. We provide narrative accounts of the set-up, operation and main processes of PPI, and its perceived impact. PPI requires a long-term perspective with participation and trust growing over time, and both users and researchers learning what approaches work best. PPI is a complex interplay of clarity of purpose, defined roles and relationships, organised support (paid PPI staff) and a well-funded infrastructure. ‘Soft systems’ are equally important such as flexible and informal approaches to meetings, adapting timetables and environments to meet the needs of lay members and to create spaces for relationships to develop between researchers and lay members that are based on mutual trust and respect. This case study highlights that the right combination of ethos, flexible working practices, leadership, and secure funding goes a long way to embedding PPI beyond ad hoc involvement. This allows PPI in research to be integrated in the infrastructure and sustainable.

Designing a placebo device: involving service users in clinical trial design

Service users are increasingly involved in the design of clinical trials and in product and device development. Service user involvement in placebo development is crucial to a credible and acceptable placebo for clinical trials, but such involvement has not yet been reported.

The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

Plain English summaryIn the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI.AbstractBackground: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research.Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded by the NIHR School for Primary Care Research (SPCR). We applied recognised quality indicators to assess the quality of PPI and assessed its impact on research.Results: We examined 200 grant applications and reports of 181 projects. PPI was evident in the development of 47 (24%) grant applications. 113 (57%) grant applications included plans for PPI during the study, mostly in study design, oversight, and dissemination. PPI during projects was reported for 83 (46%) projects, including designing study materials and managing the research. We identified inconsistencies between planned and reported PPI. PPI varied by study design, health condition and study population.Of 46 (24%) of 191 questionnaires completed, 15 reported PPI activity. Several projects showed best practice according to guidelines, in terms of having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However few projects offered PPI contributors training, used PPI to develop information for participants about study progress, and had PPI in advising on dissemination.Beneficial impacts of PPI in designing studies and writing participant information was frequently reported. Less impact was reported on developing funding applications, managing or carrying out the research. The main cost of PPI for researchers was their time. Many researchers found it difficult to provide information about PPI activities.Our findings informed:a new Cost and Consequences Framework for PPI in primary care research highlighting financial and non-financial costs, plus the benefits and harms of PPIFifteen co-produced recommendations to improve PPI in research and within the SPCR.Conclusions: The extent, quality and impact of PPI in primary care research is inconsistent across research design and topics. Pockets of good practice were identified making a positive impact on research. The new Cost and Consequences Framework may help others assess the impact of PPI.

AB0817 Improving care for patients with osteoarthritis in five european countries: the jigsaw-e patient panel

Background EULAR guidelines for osteoarthritis (OA) endorse high quality care and support to self-manage with core recommended treatments such as exercise, weight loss and the provision of written information and education. An EU-funded project, Joint Implementation of Guidelines for oSteoArthritis in Western Europe (JIGSAW-E)1, aims to improve the management of OA across five European countries (UK, Netherlands, Norway, Denmark, Portugal) by implementing an intervention to enhance the OA consultation. Coordinated, cross-border Patient and Public Involvement and Engagement (PPIE), working in active partnership with the project team, is an essential component of JIGSAW-E. Objectives To describe the PPIE in the JIGSAW-E project. Methods A two-day international workshop established the JIGSAW-E Patient Panel to act as the voice of patients and the public in the project and to co-develop clear information and resources for patients. Panel members meet regularly with the project teams in each country. The Patient Panel is coordinated and supported by dedicated PPIE teams in the UK and Netherlands. Results The JIGSAW-E Patient Panel consists of Patient Champions and patient representatives from newly established or existing patient groups in each of the five countries. The Patient Champions form a core group of seven patient representatives who work closely with the Patient Panel and the JIGSAW-E team. PPIE activities have included: One Patient Champion sits on the JIGSAW-E project steering committee. In the Netherlands, Patient Panel members substantially contributed to the translation and cultural adaptation of a guidebook for patients with OA. This process will continue as JIGSAW-E is rolled out in each of the five countries. Patient Panel members in the UK have helped refine an OA Quality Indicator questionnaire2 for use in JIGSAW-E. A glossary of terms has been developed to support the involvement of Patient Panel members throughout the project. Conclusions Effective and meaningful PPIE is a central component to delivery and success of raising awareness and implementing the OA management recommendations on a national level. The Patient Panel represents a step forward in international collaboration of PPIE within implementation projects. The Patient Panel is producing culturally appropriate and relevant information and resources for patients in five European countries. Future activities may include the development of patient stories to support increased adoption of JIGSAW-E, providing the patient perspective during training of health care professionals, and the digitisation of patient resources into Smartphone or tablet Apps. References https://goo.gl/a4xYUV. Blackburn et al. Res. Involvement and Engagement (2016) 2:5. doi: 10.1186/s40900-016-0019-x. Acknowledgements JIGSAW-E is funded via the West Midlands AHSN by EITHealth. Funding from the WM AHSN, the Regional Innovation Fund NHS England and Shropshire CCG. KD is part funded by a Knowledge Mobilisation Research Fellowship (KMRF201403002) from the NIHR. Disclosure of Interest None declared