2017/18 – 2021/22
This strategy sets out our vision, commitment and approach to public and patient involvement (PPI) and engagement (PPE) in research. It underpins the NIHR Imperial Biomedical Research Centre’s (BRC) commitment to actively involve patients and the public as partners in the processes by which clinical research is identified, prioritised, designed, conducted, implemented, disseminated and evaluated.
Patients are at the heart of the NIHR Imperial BRC’s mission. Ensuring that those patients and the wider public are involved in the activities undertaken within the BRC is a key priority for us. Patients and the public bring a wealth of experience and provide valuable perspectives on the way that clinical research is designed and delivered.
Inclusive and accountable public and patient involvement and engagement will improve the quality and relevance of research conducted within the BRC Themes. This will generate improvements to healthcare and patient benefits within each research Theme.
This strategy has been developed by the NIHR Imperial BRC Public and Patient Panel, the Imperial Patient Experience Research Centre (PERC) and the Imperial College Healthcare NHS Trust (ICHT) Research Committee. The design and delivery of BRC public and patient involvement activity is supported by PERC, a core facility of the NIHR Imperial BRC. PERC also provides advice on patient and public engagement.
Implementation of the Patient and Public Involvement and Engagement Strategy 2017/18 – 2021/22 is the responsibility of the Patient Experience Research Centre on behalf of the BRC Director. A NIHR Imperial BRC Public Advisory Panel (previously NIHR Imperial BRC Patient and Public Panel) will be established for 2018-2022 to act as a critical friend and adviser to the BRC/PERC in the delivery of this strategy. The BRC Director and PERC Director will appoint a Chair of the Panel who will attend relevant meetings of the ICHT Research Committee. The Panel will include partners who will each be linked to one or more of the 12 Themes of the BRC. These PPIE “champions” will liaise with PPIE leads from the Themes, and together form “champion pairs” to promote effective PPIE within the Theme. Terms of Reference (TOR) of the Panel will be developed and approved in Q2 2018*.
NIHR define public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. Examples of public and patient involvement activity include working with researchers to develop or comment on research materials, providing advice as members of a project steering group, and undertaking elements of research e.g. conducting interviews with participants.
NIHR define public engagement as “where information and knowledge about research is provided and disseminated”. Examples of public engagement activity include disseminating the findings of a study to research participants, colleagues or members of the public, raising awareness of research through media such as television programmes, newspapers and social media and open days at research centres where members of the public are invited to find out about research.
Our vision is to achieve meaningful public and patient involvement embedded across the entire organisation with active consultation and collaboration in individual research projects, research Themes and at board level, and where feasible with user-led projects. To complement this, we will ensure active public engagement is undertaken across the organisation with a proactive approach to make our work accountable, transparent and relevant to the public.
We will achieve our vision by:
- Increasing sustainable capability and delivery of PPIE across the BRC
- Broadening the diversity of lay partners and participants
- Working in collaboration with lay partners and organisations to co-produce research
- Collaborating with key players in local and national health research
- Embedding standards, reporting and a culture of feedback and evaluation to demonstrate and evidence the impact of PPI
1. Increase sustainable capability and delivery of PPIE across the BRC
We believe that PPIE should be co-designed and undertaken by the people who are conducting research and their lay partners. Our aim is to train the next generation of research leaders in the principals and practice of PPIE to ensure sustainability. To this end we will:
- Deliver a programme of PPIE training for researchers and lay members with partners including Imperial Clinical Trials Unit (ICTU), Clinical Academic Training Office (CATO), NIHR Imperial Clinical Research Facility (CRF), Graduate School and undergraduate and postgraduate courses at Imperial College.
- Provide bespoke support to researchers on PPIE.
- Develop and maintain an online PPIE Resource Hub.
- Use the PERC website to promote PPIE activities across the BRC, including a blog of activities.
- Co-ordinate a rolling programme of NIHR Imperial BRC funded PPIE projects.
- Develop novel small-scale funding approaches to encourage and support PPIE activity.
- Promote appropriate policies, procedures and guidelines (including the INVOLVE guidance for remuneration of lay partners).
- Promote and pilot a network of PPIE “Champion pairs” within BRC research Themes.
- Maintain a record of PPIE activity within the research Themes.
- Promote and support public engagement activities across the BRC.
- Celebrate success of PPIE in research through regular showcasing events.
2. Broaden the diversity of lay partners and research participants
We believe that involvement in research as lay partners and participation in research should be accessible to everyone and we aim to broaden the diversity of those involved in our PPIE activities. To this end we will:
- Develop a broad public panel as a resource to collaborate on research, quality improvement and education.
- Promote and facilitate the inclusion of under-represented and seldom-heard groups through active engagement with local partners, organisations and communities.
- Actively seek and train new partners to ensure sustainability, diversity and new perspective on the Panel.
3. Work in collaboration with lay partners and organisations to promote co-production of research
We aspire to a model of co-production and co-creation of research with lay partners, scientists and practitioners. We will:
- Work in partnership with the Panel.
- Actively facilitate and promote co-production methods for BRC research through training, advice and access to resources.
- Promote the principles of Responsible Research and Innovation (RRI).
4. Collaborate with key players in local, national and international research
We aim to share learning and resources to support effective PPIE, making best use of resources and reducing duplication. To this end we will:
- Maintain and strengthen relationships with local research organisations.
- Contribute to national PPIE networks, guideline and standards development and impact evaluation.
- Work with international partners to share good practice on PPIE and RRI.
5. Embed monitoring, evaluation and reporting
We believe in the importance of adhering to appropriate standards in PPIE and embedding a culture of evaluation to demonstrate and evidence the impact of PPIE. To this end we will:
- Develop, pilot and implement a tool for evaluating the impact of PPIE in research projects/programmes.
- Develop and implement key performance indicators (KPIs) for the monitoring, reporting and evaluation of PPIE.
- Work to implement and evaluate national standards for PPIE.
* The TOR of the NIHR Imperial BRC Patient and Public Panel cover 2014-17 and therefore need to be renewed.
For more information about our public and patient involvement and engagement strategy and activity please contact PERC at firstname.lastname@example.org.
Strategy Review date: April 2020