Patient & Public Involvement in research Support for Researchers Working with Public & Patient Groups

Susan Hrisos, Senior Research Associate & Dave Green, PPI representative

May 2014

Format of session• Introduction to Patient & Public

Involvement in Research

• Experience of ‘doing’ PPI – Researcher – PPI representative

• Interactive session– Small group work

Patient & Public Involvement (PPI)

• Huge increase in the involvement of patients in improving their health & healthcare in recent decades– Examples: shared decision making; self-management of chronic illness;

development of healthcare policy, clinical guidelines & patient literature

• Evidence of benefit from involvement in healthcare:– active participation during consultations is associated with better

health outcomes (Kaplan 1989; Kaplan 1996)– increased involvement improves aspects of medical care (Atkin 1998;

Liaw 1996)– involvement improves treatment compliance (Bibowski 2001)

PPI in improving Research

• Historically patients & public have not had a large influence on research prioritisation or commissioning, and have not been involved in the research process

• Research can seem irrelevant to patient & public needs

• Dissemination of findings to take too long

Patient & Public Involvement in Research

PPI has become an important part of research activity & is supported by government & health policy– NHS Research Governance Framework (2010): patients should be “active

partners” in the research process– INVOLVE: Unique national advisory group that promotes patient & public

involvement in research, supported by NIHR Central Commissioning Facility. (INVOLVE www.invo.org.uk)

Expectation of PPI contribution that goes beyond “tokenism”

I.e. To have a more meaningful & identifiable role, e.g. advising on research proposals; assisting in project design

Tokenism

Is OUT!

INVOLVE

• Unique national advisory group that promotes consumer involvement in research– Supported by NIHR Central Commissioning Facility

• “Involvement” = an active partnership between public & researchers in the research process rather than the use of people as research “subjects”. (INVOLVE definition. www.invo.org.uk)

– rationale for PPI is the production of research that will• be more relevant to people & more likely to be used• reflect the needs & views of the public• be more likely to produce results that can be used to improve practice and social care

– Promotes involvement in all aspects of the research process, including• Design of questionnaires & topic guides• Preparing patient information• Conducting interviews & focus groups• Analysing transcripts

Learning from experience

From novice to expert in 3.5 years. PPI, research and learning curves

Reflections from the “Improving Patient Safety Project”

Susan Hrisos Senior Research Associate

Dave Green Patient Participant & PPI research

team member

This is independent research funded by the NIHR under its Programme Grants for Applied Research scheme (RP-PG-0108-10049). The views expressed in this presentation are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

NIHR Patient Safety Programme: “Improving patient safety through the involvement of patients”

(Programme Lead: Prof. John Wright. Academic Lead: Prof Ian Watt)

Project 1: Bradford Patient measure of

organisational safety– Lead: Prof. Rebecca

Lawton

Project 2: Bradford Patient error

reporting system– Lead: Prof. Gerry

Armitage

Project 4: Newcastle Direct patient intervention to

reduce their risk of harm – Lead: Prof. Richard Thomson

Project 3: Leeds Patient-centred

training programme – Lead: Prof Vikram

Jha

Core focus: Development of user-

informed approaches to improving patient safety.

Programme PPI: Steering Structure

Annual Steering Seminar2010 Programme research Day

2012 Research stream within PS Conference2013 Scrutiny committee

Patient Panel meeting6 monthly

3monthly informal meetingsWebsite & email fora

Newsletter

Scientific Steering YQSR group meeting

3 monthly

Progress meeting3 monthly

Project 4 team meeting

2 monthly

Project 1 team meeting2 monthly

PPI ‘pre-team meeting’ meetingAd Hoc interim PPI meetings

‘Business ‘emails‘Maintenance’ emails

Dissemination activities

Panel Chairs

Project 4 team meeting

2 monthly

Project 4 team meeting

2 monthly

Newcastle Project: Co-design

Newcastle Project: ‘Extra-curricular’ PPI

Assistance with patient recruitment for interview Participant observation in a patient focus group Analysis of focus group transcript

Co-facilitated a creative thinking workshop with PPI peers Development & design of ThinkSAFE intervention materials

Local & national dissemination of study & developments Piloted patient focussed materials & data collection measures

Interactive Session

ResearchInvolvem

ent

Small group exerciseYour seedling research idea is awaiting “involvement nitrate”

Task One (10 mins): As a group …• Discuss your research projects.• Identify who might be your key

stakeholders.

Think about …• Who do you need to involve & when? • Where are they in the bigger picture? • Why are they important?

Place your stakeholders on the diagram

Task Two (5- 10mins): Imagine that you already have a “Dave” on your research team …• What might his role be in enhancing stakeholder

engagement & involvement in your research? • How can he help feed your research with their

perspective ?• What research activities might he contribute to? Place “Dave” on your diagram where you think he has a role to play. Write down what this role is at this place.

Task Three (5mins per group):Feedback on one aspect of “Dave’s” potential PPI contribution

Small group exercise #1

Research Cycle

INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/

In small groups discuss:• What might involvement look like at the different

stages of the research cycle?– How have/would you go about involving people?– Who have/would you involve?– Why involve - what impacts do you anticipate?

Prepare feedback on:• Proposed PPI involvement at different stages• Anticipated impact relative to proposed involvement

Feedback to full group (2-3mins)

Task 2

Thank you!

Some challenges …

Patient PanelGroup dynamics & cohesion - variation in commitment Communication between members between meetingsExpectations & clarity of PPI role PPI understanding of research process & methods

ResearchersInter-personal dynamics – managing relationshipsCommunication between meetingsBalancing PPI preferences for level or type of involvement Managing expectations & having clarity of PPI role Concerns about undermining research quality & rigourAdditional work load/demands on time

Some solutions …Clarity of roles, expectations:

Terms of reference for PP & researchersPPI Mentor

PP Training:Research processResearch methodologies

Facilitating communication:PP newsletter; PP website forum, PP email forumInformal ‘coffee morning’ meetings Increased contacts with researchers

Accepting that we might not always get it right