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Patient & Public Involvement in research Support for Researchers Working with Public & Patient Groups Susan Hrisos, Senior Research Associate & Dave Green,

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Presentation on theme: "Patient & Public Involvement in research Support for Researchers Working with Public & Patient Groups Susan Hrisos, Senior Research Associate & Dave Green,"— Presentation transcript:

1 Patient & Public Involvement in research Support for Researchers Working with Public & Patient Groups Susan Hrisos, Senior Research Associate & Dave Green, PPI representative May 2014

2 Format of session Introduction to Patient & Public Involvement in Research Experience of ‘doing’ PPI – Researcher – PPI representative Interactive session – Small group work

3 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)

4 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

5 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 )  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!

6 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. – 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


8 Learning from experience

9 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.

10 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.

11 Programme PPI: Steering Structure Annual Steering Seminar 2010 Programme research Day 2012 Research stream within PS Conference 2013 Scrutiny committee Patient Panel meeting 6 monthly 3monthly informal meetings Website & email fora Newsletter Scientific Steering YQSR group meeting 3 monthly Progress meeting 3 monthly Project 4 team meeting 2 monthly Project 1 team meeting 2 monthly PPI ‘pre-team meeting’ meeting Ad Hoc interim PPI meetings ‘Business ‘emails ‘Maintenance’ emails Dissemination activities Panel Chairs Project 4 team meeting 2 monthly Project 4 team meeting 2 monthly

12 Newcastle Project: Co-design

13 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







20 Interactive Session Research Involvement

21 Small group exercise Your 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

22 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

23 Research Cycle INVOLVE

24 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

25 Thank you!

26 Some challenges … Patient Panel  Group dynamics & cohesion - variation in commitment  Communication between members between meetings  Expectations & clarity of PPI role  PPI understanding of research process & methods Researchers  Inter-personal dynamics – managing relationships  Communication between meetings  Balancing PPI preferences for level or type of involvement  Managing expectations & having clarity of PPI role  Concerns about undermining research quality & rigour  Additional work load/demands on time

27 Some solutions … Clarity of roles, expectations:  Terms of reference for PP & researchers  PPI Mentor PP Training:  Research process  Research methodologies Facilitating communication:  PP newsletter; PP website forum, PP email forum  Informal ‘coffee morning’ meetings  Increased contacts with researchers Accepting that we might not always get it right

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