Let‟s Talk Research
24th September 2014
The NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre
is funded by the National Institute for Health Research (NIHR) and is a partnership between
the University of Manchester and Salford Royal NHS Foundation Trust
Greater Manchester
Primary Care Patient Safety
Translational Research Centre
Doing PPI at scale: What is the impact of public involvement in the
NIHR Greater Manchester Primary Care Patient Safety
Translational Research Centre? Interim findings of a formative
evaluation
Sally Giles (Research Fellow) and Carolyn Gamble (RUG member)
Outline of presentation
• Who are we?
• Why primary care?
• Our aims and research themes
• What is PPI?
• Our PPI structure
• Why evaluate?
• PPI evaluation activities at Greater Manchester PSTRC
• Findings from the PPI evaluation
• Research User Group (RUG) perspective – A Case Study.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Who are we?
The NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre is
funded by The National Institute for Health
Research (NIHR) and is a partnership between
Salford Royal NHS Foundation Trust and the
University of Manchester
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Why primary care?
• Primary care 85% of contacts in the NHS
• In 2011 in England: over 1 billion prescription items dispensed, at a cost of over £8.8 billion.
• 1.6 million people visit a pharmacy daily (75% for health reasons)
• There is a perception that primary care as a low technology environment where safety is not a problem.
• Primary care patient safety is under researched and under funded / most PS research in hospitals
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Aims
Greater Manchester PSTRC aims to improve patient safety
in primary care through high quality translational research
through the achievement of three objectives:
1. Develop evidence-based innovative approaches to keep
patients safe in their interactions with primary care;
2. Develop capacity in primary care patient safety research;
3. Develop and test interventions aimed at both patients
and practitioners to improve patient safety.
Research Themes
Core Theme (Prof Stephen Campbell)
Governance/Finance, EMB, SAG, PPI-PE
1. Medication safety (Prof Darren Ashcroft / Prof Tony Avery)
2. Multimorbidity (Prof Peter Bower)
3. General practice (Prof Stephen Campbell)
4. Interface / informatics (Prof Iain Buchan)
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
What is PPI? NIHR INVOLVE defines PPI as research being carried out „with‟ or „by‟ members of the
public, rather than „to‟, „about‟ or „for‟ them. Involvement where members of the public are actively
involved in research projects and in research
organisations.
Participation where people take part in a research
study.
• as joint grant holders or co-applicants on a
research project
• involvement in identifying research priorities
• as members of a project advisory or steering
group
• commenting and developing patient
information leaflets or other research materials
• undertaking interviews with research
participants
• user and/or carer researchers carrying out the
research
• people being recruited to a
clinical trial or other research
study to take part in the research
• completing a questionnaire or
participating in a focus group as
part of a research study.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
PPI Structure
8% of our overall budget is allocated to PPI
Reports to Information
Dialogue
Representation
RUG:
Associate
Core Research User
Group (RUG)
PPI/PE Partners: Citizen Scientist
PRIMER
Nowgen
Inspiration NW
TwoCan Associates
NW People in Research Forum
Friends of
GM PSTRC
Executive
Management Board
GM PSTRC
Themes
Strategic
Advisory Group
Simon Denegri
(Chair, INVOLVE)
Theme and Project
PPI/PE
Katherine Murphy
(Patients Association)
Salford Royal NHS
Foundation Trust Chair of RUG
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Why evaluate?
• Funders increasingly ask for evidence of PPI in research
design and development
• National Institute for Health Research (NIHR) is
expecting to see evidence of PPI in research studies and
centres that it funds
• Moral and ethical argument, i.e. what works and what
doesn‟t work
• Between 8-9 percent of the Greater Manchester PSTRC
budget is allocated to PPI.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
PPI evaluation activities at Greater Manchester
PSTRC
Aims and Methods: The evaluation addresses 2 key questions: 1. What impact does the partnership working between
the RUG and the Centre‟s researchers have on the work of the Greater Manchester PSTRC?
Data collected via interviews with stakeholders, feedback forms from RUG members and researchers, other documents such as minutes, blogs, observation of meetings.
2. What is the perceived quality of RUG members‟ involvement in the work of the Greater Manchester PSTRC?
Data collected via online questionnaire after every RUG meeting.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
PPI evaluation activities at Greater Manchester
PSTRC
Progress to date…
• Baseline interviews with RUG members, and key staff
(n=22)
• Online survey for RUG members after each RUG
meeting (n=61)
• Follow-up interviews with RUG members (n=22), and
key staff (6 months) and non-participant observation of
4 RUG meetings.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
PPI evaluation activities at Greater Manchester
PSTRC
Data analysis:
• Interviews were fully transcribed
• Two researchers initially analysed the same four interview transcripts separately. They discussed and compared their analysis to develop an analytical framework
• Transcripts from the interviews, field notes and documents were analysed respectively, using the agreed analytical framework.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Findings from PPI Evaluation
Baseline interviews- three key themes
• Previous Experience of PPI –wide variation: some have no experience, whilst others have been involved in PPI in research for more than 5 years
• Expectations – considerable variation: for example, to be equal partners with researchers, reviewing documents, governance of research projects i.e. – “The RUG will ensure projects are completed and deliver”
• Motivations: passionate about PPI, poor health, to improve the health service, “bad experiences” as a patient.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Findings from PPI Evaluation Examples of involvement at theme level • RUG members included as co-authors on a submitted protocol paper
(Multi-morbidity)
• Involvement in qualitative meta-synthesis – training on how to do it (Multi-morbidity)
• RUG members‟ involvement in Ethics amendment (Medication Safety)
• RUG member has co-facilitated a focus group (Medication Safety)
• RUG members suggested an open-ended question to the never events questionnaire (General Practice)
• RUG members have suggested research ideas relating to patient access to records, and health sensor technologies (Interface & Informatics)
• RUG members have been involved in commenting on a systematic review protocol and are involved in screening and analysing papers for the review (Core theme).
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Findings from PPI Evaluation
What has gone well?
• RUG members are enjoying the process of involvement, especially since the engagement at theme level has begun
• On the whole, RUG members have found the researchers welcoming
• Researchers have commented on the enthusiasm of the RUG members
• The RUG has bonded well and members are appreciative of the systems and processes in place to support it.
Findings from PPI Evaluation
Issues or concerns
• What can the RUG do as an group and how can it be used as entity? i.e. it‟s clear what RUG members do within their themes, but less clear what they do as group
• Perception of poor communication between RUG members and researchers from some interviewees
I think I get the sense really we were only really told about the bit
that concerned us, so I feel as though there was a whole host of other stuff in there that I didn't really get if you see what I mean (RUG member)
• Is the „PPI structure‟ right? - some RUG members want to be more involved in the research.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Research User Group (RUG) Perspective
Case Study
My involvement: How it all started?
• Actively looking for involvement opportunities
• Why patient safety?
• Selection process
• Early stages of the RUG, getting to know each other
• Electing chair/vice-chair and theme affiliation.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Research User Group (RUG) Perspective
Case Study
Activities and impact – personal experiences
• Importance of combining professional skills and personal patient experience
• Reviewed patient forum websites
• Public engagement event – for example chose the title to make it more accessible to the general public – “What should never happen at your GP practice?”
• Involvement in a systematic review.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Research User Group (RUG) Perspective
Case Study
Purpose of the PPI Evaluation Advisory Group (PEAG)
Membership – researchers, RUG members, PPI experts, external PPI evaluation team
1. Advise the evaluation of the Research User Group (RUG)
2. Support assessment of impact
3. Advise how best to encourage other stakeholders to take part in the evaluation
4. Agree how best to communicate findings both internally and externally.
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Research User Group (RUG) Perspective
Case Study
PPI Evaluation Advisory Group (PEAG)
• Involvement of RUG members. Why?
• Our involvement?
• Why is it important?
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Research User Group (RUG) Perspective
Case Study
The future…….?
• Engaging the “easy to ignore” groups
• RUG working more as a group
• There‟s work to be done…..
• Scope for RUG involvement in the future.
primary care
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre
Acknowledgements • Dr Jonathan Boote (external evaluation lead)
• Dr Jill Thompson (external evaluation team)
• Dr Jill Stocks (GM PSTRC)
• Mr Mark Jeffries (GM PSTRC)
• Miss Amy Mathieson (GM PSTRC )
• Dr Sudeh Cheraghi-Sohi (GM PSTRC)
• Miss Joanne Beresford (RUG member)
• PEAG members
NIHR Greater Manchester Primary Care
Patient Safety Translational Research Centre