Patients Active in Research (PAIR) – Projects
Development of James Lind Alliance (JLA) Priority Setting Partnerships (PSPs)
JLA PSPs help to identify the research that matters most to patients/carers and clinicians across a growing range of health conditions. PAIR funds several of these directly, while the BRC also provides a facility to co-ordinate PSPs “in house”. In parallel, we are working with NETSCC (the NIHR, Evaluation, Trials and Studies Co-ordinating Centre, which manages the JLA) to explore and develop other aspects of the method. For example, we commissioned a project to compare three different ways by which the JLA can gather research questions from patients and carers: survey (the traditional JLA approach), discussion groups and extracting data from interviews gathered by Healthtalkonline. This was the first time that a PSP used all three methods and the study aimed to assess which was the most impactful and cost-effective. The results are mainly relevant to those who want to run PSPs and we are working with NETSCC to see how best to develop them into recommendations. In brief, survey data was the most comprehensive, while Healthtalkonline data revealed one unique uncertainty within the top 10 that did not come through the other data-collection routes.
You can read the full report here: Final Revised Evaluation Report for Oxford Biomedical Research Centre.
Development of methods to assess the impact of PPI activity, including that of the JLA
The evidence that PPI in research makes research “better” is complex to obtain, and limited. We are keen to address this and so embed our activities in what is shown to work. We have appointed a postdoctoral research fellow in PPI, Joanna Crocker, supervised within the University’s Department of Primary Care Health Sciences and her work is guided by a steering group of internal and external experts.
We also commissioned an impact assessment project using PiiAF – the Public Involvement Impact Assessment Framework. The purpose was both to carry out the first ever “pilot” of PiiAf as a PPI impact assessment tool, and to use it in a JLA PSP to identify where the steering group felt the impact of PPI could most usefully be explored. Their top priority was to look in depth at the impact of different types of survey participant (patient/carer/clinician and subgroups of these) on suggested treatment priorities. This is an important finding as pursuing it may shed light on how much “weight” is given to different contributors and what happens to their ideas as they pass through the JLA process. We are working with NETSCC to see how best to take this work forward.
You can read the full report here: Measuring PPI impact
A website for patient involvement in research, developed with and for patients
We have set up, with and for patients, a website for those who might want to play a part in research. This is in close collaboration with the Academic Health Science Network, as the site, like this network, covers the whole of the Thames Valley. The site acts as a “one stop shop” for patients to find opportunities for research involvement as well as links to trials and studies seeking patients. A key first step was a survey of AHSN partners to see who was doing what PPI in research, to help us ensure that the information on the site would be as comprehensive as possible.
Working with industry in research: what do patients want?
Driven in part by the “wealth creation” agenda of the National Institute for Health Research (NIHR) which funds the Oxford Biomedical Research Centre and Unit (BRC/U), extensive partnerships are made between the BRC/U and the drug and biotechnology industries, yet patients know very little about these. The BRC/U are committed to working with patients in all that they do, the NIHR wants patients to provide leadership about working with industry, and patients themselves want this. While understanding that industry exists to make money, patients want partnerships with it to be conducted openly and to meet their needs.
We held a workshop on May 7th 2014, to inform our PPI strategy on how best to make meaningful and constructive links with industry from the patient perspective. You can read the report and action plan here (PDF download).
Supporting PPI across the BRC and BRU
In April 2015 we held a one day workshop, bringing together some of the members of Patients Active in Research (PAIR), with researchers or those who have PPI lead roles within their BRC/U theme or department. The main aim of the day was to find out how we could help those who do PPI in Oxford. As a result, we have:
- set up a network of researchers involved with PPI, to provide a forum for them to share highs, lows, practical support, advice and new ideas; we held a second workshop in October 2015 and are planning a third for Autumn/Winter 2016;
- put together a set of eight “Briefing notes for researchers,” spanning topics from “When can I do PPI in the research cycle?” to “What is good PPI?” – you can download these here: PPI Briefing Notes (as a PDF);
- gathered 15 case studies which we have shared with our patient and public advisers, whose feedback highlighted the extent to which involvement and engagement are often confused, but all agreed that sharing them was still a good idea. You can find these here;
- listed all the resources in a PDF: PPI Resources_July2016.
In addition to these core PPI activities, the BRC/PAIR also funds the work of Louise Locock and Joanna Crocker
Louise Locock, BRC Health Experiences Fellow
Louise uses health experience research methods to support BRC PPI activity with, for example, interviews with research participants in cardiology changing how research is done. Her current work, supported by a BRC-funded research assistant, is on the experiences of patients and members of the public who become involved in how research is designed and carried out, and also on the experiences and feelings of researchers working with patients in this way. Louise is supported by advisory panels comprising key internal and external experts, their involvement helping to optimise the impact that her studies have on how PPI is carried out. The interviews will be available on www.healthtalkonline.org. Results from Studies already completed are available http://healthtalkonline.org/peoples-experiences/medical-research.
Joanna Crocker, BRC Patient Involvement Impact Assessment Fellow
Joanna’s work focuses on evaluating and assessing the impact of patient and public involvement (PPI) in research. PPI is increasingly regarded as a vital component of medical and health research and can be a pre-requisite for obtaining research funding, but the evidence base for its benefits is currently weak. We need to develop more rigorous methods to capture fully whether, under what circumstances, and to what extent, PPI in research leads to better research and is ultimately beneficial to patients. Joanna leads the PIRRIST project, which will develop and evaluate a PPI ‘complex intervention’ aimed at enhancing recruitment and retention in surgical trials. She is also conducting a systematic review of the impact of PPI on recruitment and retention of participants in clinical trials. She recently completed a mixed methods study evaluating a James Lind Alliance Priority Setting Partnership, and a qualitative study of PPI contributors’ views on the value and impact of PPI in research – part of the BRC-funded HealthTalk project about PPI in research.