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

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

How to get involved?

For more information or to get involved visit:

www.gmpstrc.nihr.ac.uk

Thank you

Any questions?