Personal and Public Involvement Action Plan

September 2015

Background Clinical research aims to help improve health and wellbeing by increasing our understanding of the diagnosis, treatment and prevention of disease. If we are to improve health and social care we need more knowledge and more innovation in the application of knowledge. HSC R&D was established in 1998 to support and encourage health and social care research & development in Northern Ireland through direct funding for research studies as well as investment in training and infrastructure to build local capacity for research. One of its strategic aims is to ensure Personal and Public Involvement in all aspects of its work.1 This document sets out the roles and responsibilities for the PPI Representatives who work in partnership with HSC R&D Division, Public Health Agency to implement Patient and Public involvement in HSC Research in Northern Ireland. This document is aligned closely with the Strategy for Personal and Public Involvement in HSC Research and should be read in conjunction with it.2

The PPI panel for HSC R&D consists of a pool of service users, carers and members of the public recruited over the past 5 years to provide their perspective on HSC R&D panels. Members were recruited via advertisement through the PCC, via the Trust Research Committees, the NICRN Clinical Management Groups, Voluntary Sector research committees and word of mouth. Membership of the panel is voluntary and new members are recruited/welcomed on an on-going basis. Purpose The purpose of the Group is to assist HSC R&D Division with implementing PPI in its decision making processes and to raise awareness of the benefits of PPI in research among HSC researchers and the wider public. Roles and Responsibilities It is not intended that the PPI representative will represent any group of patients or organisation but will lend his/her individual perspective as a member of the general public or a patient, client or carer with experience of a particular illness, condition or service. PPI representatives may be asked to: • sit on research funding award panels • attend meetings of committees/groups • review research documents 1

• • • • •

take part in research steering groups respond to consultations undergo relevant training assist researchers with grant applications assist with PPI training for researchers

Through these activities he/she may be asked to give views on the: • • • •

topics researchers are studying research questions they are asking wording of patient information sheets methods of recruitment of patients or clients to research studies • burden/impact of a participant taking part in a study • value for money of a study • the way in which the research findings are being shared Terms of Reference PPI representatives on R&D panels are asked to: • bring their own experience as a service user, carer or member of the general public to assist the panel in understanding the perspectives of service users and the public

• • • • • • •

that are relevant to the discussion, particularly in relation to the PPI plan not act as a representative of any particular group or body contribute to the discussions which guide the panel’s decisions and recommendations comment on the transparency and fairness of panel discussions prepare for the panel by reading papers before the meeting and raising any issues for clarification with the Chair keep confidential any information that they acquire as a result of being a member of the panel identify any personal needs for training and support participate in any evaluation of this role or the activities of the panel

Criteria for the Evaluation of PPI in Grant Applications to HSC R&D Division PPI is now a requirement for applications to all HSC R&D Funding Schemes. The following criteria have been developed to evaluate PPI in applications and should be used as a guide by PPI representatives on funding panels. • Has the applicant demonstrated that they have involved service users and the public in 2

identifying the research topic, prioritizing the research questions and/or in preparing the application? • Does the proposal involve service users and/ or the public in a role other than research applicants and has the applicant chosen an appropriate user or public group to be involved • Has the applicant demonstrated that they have sought to involve service users and the public in a partnership role in the research process for this • Does the application aim to incorporate PPI in the reporting/disseminating of the outcomes of the study? Support for PPI Representatives HSC R&D Division will ensure that: • PPI members feel welcomed, included and respected • make clear to all stakeholders that PPI perspectives are valued • treat PPI members as equals • ensure PPI members are given practical support so they can meaningfully and effectively contribute to meetings • help others to understand the benefits of PPI and encourage them to give the PPI perspective due consideration.3

HSC R&D will provide an on-going programme of support which will be tailored to individual needs. This may include: • a named point of contact • induction • mentorship • training e.g. in the research process/being heard • written guidance • study days • master classes • visits to Research Centres • other activities identified by PPI representatives Reimbursement Expenses for travel and subsistence for PPI activities will be reimbursed in accordance with the HSC Service User and Carer Expense Policy4. Action Plan The following plan details the actions, responsibilities and desired outcomes for the group over the period 15/16. These actions derived from a workshop facilitated by Bec Hanley in December 2014.

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Standard 4- Knowledge and Skills ACTION 1. Researchers will be required to implement PPI at inception of research Action

Timescale

Responsibility

Performance Indictor/Outcome

Continue to hold events/workshops to On-going raise awareness of PPI with researchers and members of public

HSC R&D Division in partnership with NI Cancer Research Consumer Forum

• PPI implemented at outset by researchers • Clear plan for PPI evident in research proposals

Provide PPI Guidance for researchers and public on HSC R&D website

September 2015

GJ All to review

Run 2 Building Research Partnership course in conjunction with NICRCF

March 2016

HSC R&D Division in partnership with NI Cancer Research Consumer Forum

• Researchers aware of guidance and using it to implement PPI in research proposals • Information resources available. • Improved understanding and awareness • Partnerships established between researchers and public • Improved understanding and awareness

Provide one to one mentoring for new PPI representatives and researchers

As required

HSC R&D Division with PPI Representatives

Incorporate Dragon’s Den Approach in training events to encourage researchers to present proposals to group for feedback at development stage PPI to be a requirement on all funding applications and criteria agreed for evaluating PPI in proposals

As required

HSC R&D Division with PPI Representatives

• Researchers to have access to PPI in proposals as required

June 2015

HSC R&D Division

• PPI prerequisite included in all funding calls • Criteria for evaluating PPI agreed

• New PPI members and researchers supported

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Standard 3 – Opportunities and Support for Involvement Action 2 The Role of the PPI Representative in HSC R&D will continue to be developed and consolidated Action

Timescale

Responsibility

Performance Indictor/Outcome

PPI Group in HSC R&D to have a name

September 2015

ALL

• Name for Group agreed

Training events to include presentations from group members about wider roles/Challenges/Boundaries/Impact

March 2016

HSC R&D Division ALL

Update Terms Of Reference and Role Description for PPI Role in HSC R&D

September 2015

HSC R&D Division ALL

• Events held to include presentations from PPI representatives • Group has greater understanding of each other’s roles and wider impact • Terms of Reference and Role Description agreed and disseminated to group members

Develop Terms of Reference for Research Steering Committees

September 2015

HSC R&D Division ALL

• Terms of Reference for Research Steering Committees agreed and disseminated on website

Develop PPI newsletter

March 2016

HSC R&D Division ALL

• Newsletter developed and disseminated • Increased awareness of PPI Role among wider research community

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Action Standard 5 Measuring Outcomes

Timescale

Responsibility

Performance Indictor/Outcome

Action 3 Impact Measurement The impact of PPI in HSC R&D Division will be monitored and measured. Action

Timescale

Responsibility

Performance Indictor/Outcome

Email group re wider PPI activities to measure impact of PPI role in R&D

October 2015

GJ

• Report produced and disseminated to group members

Monitor annual and final reports of awardees

March 2016

GJ

• Report produced and disseminated

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Standard 4- Knowledge and Skills Action 4 Glossary of Research Terms Action

Timescale

Responsibility

Disseminate a glossary of research terms for Group’s use

September 2015

GJ

Performance Indictor/Outcome • Glossary of research terms developed and disseminated to Group

7

Standard 1- Leadership Action 5 Appointment of Co-Chair Action

Timescale

Responsibility

Appoint co-chair for Group to work with PPI Lead

December 2015

GJ

Performance Indictor/Outcome • Terms of Reference for Co-Chair agreed • Co-Chair appointed

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References: 1. Research for Better Health & Social Care. A Strategy for Better Health & Social Care in Northern Ireland. 2015-25. DHSSPSNI. 2015. 2. Strategy for Personal and Public Involvement in Health and Social Care Research. Public Health Agency. 2

nd

Edition 2014.

3. Patient and Public (PPI) Involvement in research groups. Guidance for Chairs. INVOLVE. 2010 4. Interim Service User, Carer and Stakeholder Reimbursement Guidelines and Procedures for Health and Social Care Organisations. Public Health Agency 2012.