Patient, Public, Community Engagement and Involvement

Our Aims

Our goal is to achieve meaningful public and patient involvement to be “embedded, comprehensive and active” across the NIHR ARC NWL with active consultation and collaboration in individual research projects, research themes and at board level, and where feasible with user-led projects. 

INCLUSIVE OPPORTUNITIES

Offer public involvement and engagement opportunities that are accessible and reach people and groups according to research needs. We want to ensure that our public participants are representative of the community in which we work. This means that the Public Partners Advisory Group (PPAG) and all Patient and Public Involvement and Engagement (PPIE) support across the NWL ARC will need to be as diverse, inclusive and accessible as possible.

WORKING TOGETHER

Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships. We aim to ensure the inclusion of PPIE across the research cycle. This will mean that the public, where possible, will be included from the start of a research project.

SUPPORT AND LEARNING 

Offer and promote support and learning opportunities that build confidence and skills for public involvement in research. We encourage our public participants to develop their own skillset while working with the ARC NWL. This can take many forms such as (but not restricted to) formal training in PPIE via a PPIE training course developed and hosted by the Patient Experience Research Centre (PERC) and Imperial College London[1].

COMMUNICATIONS 

We will encourage our theme participants to write up lay summaries of all ongoing research projects which can then be disseminated among our various networks (such as the Exchange Network). We will avoid jargon and use plain language for well-timed and relevant communications, as part of involvement plans and activities. 

IMPACT

Seek improvement by identifying and sharing the difference that public involvement and engagement makes to research. We will collate, reflect and disseminate regular updates and publications relevant to and on current PPIE work. This will ensure that the ARC NWL and its Themes are constantly up to date with the latest progress in PPIE research.

GOVERNANCE

Involve the public in research management, regulation, leadership and decision making. We will ensure that our public partners and PPIE are integrated as much as possible across the ARC NWL both throughout the Themes as well as in aspects of management of the ARC.

Selection of Initiatives

Our PPIE Strategy

The NIHR ARC Northwest London’s (NIHR ARC NWL) programme launched in October 2019 and is hosted by Chelsea and Westminster NHS Foundation Trust with Imperial College London as the main academic partner. The ARC NWL is a community orientated organisation. This strategy serves to ensure that our community is central throughout the ARC and all of its themes. The patient and public’s experience is central to the mission of the ARC NWL. 

With this strategy, we aim to ensure that patients and members of the public are involved in all aspects of our research. Patients and members of the public represent a wide range of experiences and insight into the challenges faced by the community of NWL. We cannot hope to tackle these challenges and injustices without the significant and meaningful inclusion of such perspectives and experiences.

By ensuring that the ARC NWL holds inclusive and accountable PPIE at its core, this strategy will improve the quality and relevance of the research conducted by the ARC NWL. With each theme following this standard, the ARC NWL will give rise to substantial improvements to healthcare, healthcare research and public and patient experiences within each research theme.

The Applied Research Collaboration Northwest London (ARC NWL) Patient and Public Involvement and Engagement Strategy 2021-25

Authored by: Prof. Helen Ward, Maria Piggin, Kabelo Murray and the ARC NWL PPAG [1] .

[1] Patient and Public Advisory Group.

Introduction:

The NIHR ARC Northwest London’s (NIHR ARC NWL) programme launched in October 2019 and is hosted by Chelsea and Westminster NHS Foundation Trust with Imperial College London as the main academic partner. The ARC NWL is a community orientated organization. This strategy serves to ensure that our community is central throughout the ARC and all of its themes. The patient and public’s experience is central to the mission of the ARC NWL. With this strategy, we aim to ensure that patients and members of the public are involved in all aspects of our research [2] . Patients and members of the public represent a wide range of experiences and insight into the challenges faced by the community of NWL. We cannot hope to tackle these challenges and injustices without the significant and meaningful inclusion of such perspectives and experiences.

By ensuring that the ARC NWL holds inclusive and accountable PPIE at its core, this strategy will improve the quality and relevance of the research conducted by the ARC NWL. With each theme following this standard, the ARC NWL will give rise to substantial improvements to healthcare, healthcare research and public and patient experiences within each research theme.

The ARC NWL programme is conducted via four research themes and three cross-cutting themes. The overarching goal of the ARC NWL is to build sustainable infrastructure for a continual improvement in health behaviours and population health, and a reduction in health inequalities for the people of NWL. 

The four research themes are as follows:

· Child Population Health

· Multimorbidity and Mental Health

· Digital Health

· Innovation and Evaluation

These are supported by the three crosscutting themes:

· Information and Intelligence

· Patient, Public, Community Engagement and Involvement

· Collaborative Learning and Capacity Building

This strategy has been developed by the NIHR ARC NWL Public Partners Advisory Group (PPAG), the Imperial Patient Experience Research Centre (PERC) and the ARC NWL Theme Leads. The design and delivery of ARC NWL public and patient involvement activity is supported by PERC, a core facility of the NIHR Imperial BRC. PERC will also provide advice on patient and public engagement while also carrying out its own participatory research as well as training courses in PPIE [3] .

[2] The ‘public’ refers to the public, patients, carers and those who use health and social care services.

[3] https://www.imperial.ac.uk/patient-experience-research-centre/ppi/ppi-training/

Governance:

Implementation of the Patient and Public Involvement and Engagement Strategy 2020 – 2025 is the responsibility of the ARC NWL and its Theme leads. The ARC NWL hosts the research theme Patient, Public, Community Engagement and Involvement. This PPIE Theme serves to monitor the adequate and appropriate integration of PPIE into the research and actions of the ARC NWL as a whole. PPIE will be supported by nominated ‘PPIE managers’ from each theme. These nominated managers, supported by the PPIE theme, will be responsible and accountable for including, delivering and monitoring PPIE across the theme. 

who will also be accountable for the monitoring and inclusion of PPIE throughout their Theme. Furthermore, the PPIE theme hosts the Public Partners Advisory Group (PPAG). This is a group of 17 members of the public (members of the NWL community) who act as a support for PPIE across the theme. The aim of this group is to be as diverse and representative of the wider NWL community as possible. Their support and integration within the ARC NWL will ensure PPIE’s integration throughout the themes. Members of the PPAG will partner with one or more of the seven Themes. The PPAG will communicate with the PPIE leads, or deputy-leads, from each Theme, and together will advocate for further PPIE within the Theme. In addition to the above, the ARC NWL Management team will maintain three seats for members of the PPAG. Terms of Reference (TOR) for the PPAG have been developed and approved [4] .

[4] See appendix item A.

Vision:

This strategy sets out our commitment, aims and approaches to fully integrating Public and Patient Involvement and Engagement (PPIE) across our research. It bolsters the commitment made by NIHR Applied Research Collaboration North West London (ARC NWL) to actively involve patients and the public as partners and contributors in the process by which our research is identified, designed, conducted, implemented, evaluated and disseminated.

Definitions:

We use the NIHR definitions of Public Involvement and Public Engagement. We have included the NIHR definition of Participation for reference:

• Public Involvement: “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. Examples of PPI 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.

• Public Engagement: “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.

• Participation: volunteers take part in a research study (as subjects / participants).

• Public: refers to the public, patients, carers and those who use health and social care services.

Our Aims:

Our goal is to achieve meaningful public and patient involvement[J1] to be “embedded, comprehensive and active” across the ARC NWL with active consultation and collaboration in individual research projects, research themes and at board level, and where feasible with user- led projects. We set out below the following aims to achieve our goal (these aims are in line with the UK Standards for Public Involvement):

1. INCLUSIVE OPPORTUNITIES: Offer public involvement and engagement opportunities that are accessible and reach people and groups according to research needs. We want to ensure that our public participants are representative of the community in which we work. This means that the PPAG and all PPIE support across the NWL ARC will need to be as diverse, inclusive and accessible as possible.

2. WORKING TOGETHER: Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships. We aim to ensure the inclusion of PPIE across the research cycle. This will mean that the public, where possible, will be included from the start of a research project.

3. SUPPORT AND LEARNING: Offer and promote support and learning opportunities that build confidence and skills for public involvement in research. We encourage our public participants to develop their own skillset while working with the ARC NWL. This can take many forms such as (but not restricted to) formal training in PPIE via a PPIE MOOC developed and hosted by PERC and Imperial College London [5] .

[5] https://www.imperial.ac.uk/patient-experience-research-centre/ppi/ppi-training/

4. COMMUNICATIONS: Avoid jargon and use plain language for well-timed and relevant communications, as part of involvement plans and activities. We will encourage our theme participants to write up lay summaries of all ongoing research projects which can then be disseminated among our various networks (such as the Exchange Network).

5. IMPACT: Seek improvement by identifying and sharing the difference that public involvement and engagement makes to research. We will collate, reflect and disseminate regular updates and publications relevant to and on current PPIE work. This will ensure that the ARC NWL and its Themes are constantly up to date with the latest progress in PPIE research.

6. GOVERNANCE: Involve the public in research management, regulation, leadership and decision making. We will ensure that our public partners and PPIE are integrated as much as possible across the ARC NWL both throughout the Themes as well as in aspects of management of the ARC.

Achieving Our Aims:

1. INCLUSIVE OPPORTUNITIES: Offer public involvement and engagement opportunities that are accessible and that reach people and groups according to research needs. This will be achieved by:

a. Involving patients or members of the public in our research as appropriate based on their lived experience, geographic region, experience of using health services or other relevant demographics with a view to prioritising the diversity of those we involve.

b. Advertising public involvement and engagement opportunities through a variety of mediums, for example, the Imperial Young People’s Advisory Network, PERC’s mailing list, ARC NWL’s mailing list, Public Health England’s People’s Panel and through community contacts.

c. Promoting and facilitating the inclusion of under-represented and underserved groups through active engagement with local partners, organisations, charities and communities.

d. Involving and engaging under-represented and underserved communities, through appropriate methods of involvement and engagement identified by and acceptable to members of these communities or their leaders.

e. Leveraging and maximising collaborator institutional contacts including outreach programmes, London School of Hygiene & Tropical Medicine’s (LSHTM) Young Scientists Programme, the Health Psychology Exchange and engagement teams’ programmes.

f. Managing digital inclusivity We are aware that digital inclusivity is a vital point in the current global context. We will ensure our research and PPIE work takes into account issues of digital exclusion and accessibility to maximize the scope of our work.

2. WORKING TOGETHER: Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships. This will be achieved by:

a. Remunerating public contributors in accordance with the NIHR’s 2020 payment policy.

b. Sharing learning and resources to support effective PPIE including by participating in, and contributing to, national PPIE networks and resource development including papers on PPIE.

c. Hosting the Exchange Network [6] four times a year.

[6] See appendix item B.

d. Supporting a series of community led and involved events.

3. SUPPORT AND LEARNING: Offer and promote support and learning opportunities that build confidence and skills for public involvement in research. This will be achieved by:

a. All staff in the ARC NWL will be expected to undertake public involvement and engagement training.

b. Training will be offered to any public contributors with whom we work.

c. Guidance will be provided by the PPIE leads from the Themes.

d. Promotion of appropriate policies, procedures and guidelines for public involvement and engagement.

e. Feedback will be collected from public contributors on the practicalities of being part of the public involvement activity.

f. The ARC NWL hosts various opportunities for our public participants to promote personal development. Examples of this are the PPIE MOOC [7] and the ARC NWL Improvement Leaders Fellowship Programme [8].

[7] https://www.imperial.ac.uk/patient-experience-research-centre/ppi/ppi-training/

[8] See appendix item C.

4. COMMUNICATIONS: Use plain language for well-timed and relevant communications, as part of involvement plans and activities. This will be achieved by:

a. Co-producing a plain language summary of results for each research project to be published on our website and tweeted from our Twitter handle.

b. The creation of alternative mediums to convey research results to the public e.g. infographics, animations etc.

c. All public engagement communications and events will be co-designed with public contributors.

d. Providing timely feedback to public contributors about the impact of their public involvement (even if nothing changes as a result of it).

5. IMPACT: Seek improvement by identifying and sharing the difference that public involvement makes to research. This will be achieved by:

a. Each project lead reporting at the end of each project (to their nominated PPIE Manager) the impact of the public involvement on their ongoing projects.

b. Public contributors and the researchers’ impact will be reported by the project lead by completion of the research project.

c. Utilising the UK Standards for Public Involvement as a quality benchmark by which we measure our public involvement, publishing papers on involving the public in our research.

6. GOVERNANCE: Involve the public in research management, regulation, leadership and decision making. This will be achieved by:

a. Each project lead completing a regular PPIE report, at agreed intervals, (to be included in annual reporting to the NIHR) stating what public involvement is being undertaken in their project and providing this to the nominated PPIE Manager.

b. Evaluating the impact PPIE has made on their research projects.

c. Including at least four members of the PPAG onto the ARC Management Group.

d. Including PPIE as a standing item on management meeting and scientific steering committee agendas.

e. We will utilize the PPIE mapping toolkit provided by Healthcare Improvement Scotland [9].

[9] https://www.hisengage.scot/equipping-professionals/participation-toolkit/

Systematically Acting on Feedback:

Within the next five years, we aim for the majority of the ARC NWL’s research projects to have PPIE meaningfully integrated throughout the research cycles. Through regular evaluations and reports on ongoing PPIE work, the PPIE research theme will be able to monitor the integration of PPIE across the themes.

By the end of 2025:

· We aim to have the PPAG as representative and diverse as possible, ensuring that we include relevant representation from the communities with which we work.

· To have at least one member of the PPAG in every theme actively participating in research projects, managerial meetings, etc.

· Have meaningful integration of PPIE across the ARC NWL.

CONTACT INFORMATION

For more information about our public involvement and engagement strategy and activity please contact us at h.ward@imperial.ac.uk OR kabelo.murray@imperial.ac.uk

Download: The Applied Research Collaboration Northwest London (ARC NWL) Patient and Public Involvement and Engagement Strategy 2021-25 (.pdf)

ASSOCIATED DOCUMENTS

See appendix item A: PPAG Terms of Reference

See appendix item B: The Exchange Network

See appendix item C: ARC NWL Improvement Leaders Fellowship Programme

Appendix A: Terms of Reference

Applied Research Collaborative Northwest London (ARC NWL)

Terms of Reference (ToR)

Public Partners Advisory Group (PPAG)

1. Background

The National Institute for Health and Care Research (NIHR) Applied Research Collaborative Northwest London (ARC NWL), part of the NIHR and launched on the 1st of October 2019, is a local collaborative programme in healthcare improvement to tackle the biggest healthcare challenges of this generation.

The ARC NWL will undertake high-quality applied health and care research, evaluation and other work (Research) across local health and care systems to close a translational gap by supporting implementation of Research and will work collectively with ARCs in other parts of England to ensure National impact.

The programme is conducted via four Research themes and three cross-cutting themes with the overarching goal to build sustainable infrastructure for continual improvement in health behaviours and population health, and a reduction in health inequalities for the people of NWL.

The four research themes are:

· Child Population Health: focusing on the first 1000 days of life, primary school years and adolescence;

· Digital Health: To understand how digital technology can be harnessed to improve the health and wellbeing of the population in NWL;

· Innovation and Evaluation: improving the translation of innovation into clinical practice;

· Multimorbidity: to improve the quality and coordination of care, experience and health outcomes for people with multimorbidity (living with two or more chronic conditions at a time), mental health and frailty.

The cross-cutting themes are:

· Patient, Public and Community Engagement and Involvement: to better understand how to co-design and implement meaningful ways of working with patients, carers and diverse communities:

· Collaborative Learning and Capacity Building: To understand the mechanisms through which people learn together to translate evidence and achieve health and care improvement;

· Information and Intelligence: to understand and improve the use of data to plan health and care.

In February 2020 an advertisement was distributed inviting applications to join the ARC NWL Public Partners Advisory Group (PPAG). The 17 members Public Partners Advisory Group have been recruited to partner with the ARC NWL and to provide Personal and Public Involvement and Engagement (PPIE) to improve health and care across NWL and to achieve higher quality and more equitable health outcomes. The 17 members of PPAG have been recruited and the following Terms of Reference (ToRs) have been prepared for consideration by the PPAG and the ARC NWL Management Committee.

2. Values

The PPAG will promote the values set out Nationally by INVOLVE and 4Pi, including:

· Respect – e.g. to listen and respect everyone’s comments in meetings.

· Support – e.g. to support each other to contribute to the discussion.

· Transparency and clarity – e.g. to be open, have open processes and avoid jargon

· Responsiveness and flexibility – e.g. to respond to expectations and the evolving RPG role.

· Fairness of opportunity – e.g. being mindful of diversity and holding everyone in equal regard

· Accountability – e.g. to be accountable for the recommendations and the researchers to report back on their actions and progress.

· Confidentiality – e.g. to maintain the privacy of personal experiences and safeguard intellectual property.

These Values have been incorporated into a set of Principles for the PPAG and are set out in Appendix A.

3. Purpose of the PPAG

· To review and co-design the plans for Personal and Public Involvement and Engagement (PPIE) in all new projects within the ARC NWL to ensure that patients, carers and the public are appropriately involved across the research cycle (e.g. in developing the proposals for research, conducting the research, and disseminating the results), including where appropriate to comment and advise on the research project design itself.

· To act as a link to local communities, organizations, charities and networks of members of the public, to advise on who might be involved in projects, and to help researchers to make contact.

· To bring together community organisations for meetings about the aims of the ARC NWL and to explore challenges to recruitment of public partners.

· To provide a portal for advice on PPIE for the individual research teams at any stage of a project.

· To receive feedback from researchers to enable understanding and measurement of the effectiveness and impact of the PPAG.

· To help evolve the PPAG, by:

·      Providing training for public partners and prospective public partners.

·      Giving feedback as to what is working well and how the research cycle could

·      be improved.

·      More effectively reaching out to new communities, who may not have made use of PPIE in research before.

·      Mentoring and supporting new public partners, particularly those who may

·      have less experience of PPIE in research.

·      Raising awareness of PPIE in local communities.

·      Issuing at least at six monthly intervals a newsletter giving information on the

·      activities of the ARC NWL and of the PPAG and such other information and news

·      as is considered to be relevant and informative for the public partners.

Members of the PPAG are encouraged to agree to work specifically with one or more of the ARC NWL themes under the supervision of the PPIE Manager but are not expected to also be a long-term lay partner to any specific research project. However, if there is a research project where a public partner, working with a particular theme, would make a particularly suitable lay partner, then this can be considered, as long as it does not impact their availability to be part of the PPAG. The PPIE Manager will maintain a register of all ARC NWL projects which have been reviewed by public partners and the relevant theme, to ensure that the ARC NWL is involving a diverse group of public partners.

4. Membership

The initial (17) public partners of the PPIE Theme have been recruited by the theme’s PPIE Manager. Future recruitment will be through an application process to be agreed by the PPAG and the PPIE Manager. A role description with details of the skills and experience desirable for recruitment is in Appendix B.

The initial appointments are for 2 years in the first instance, renewable for one or two further periods of two years, subject to review.

Membership is reliant on active participation. If a member misses three consecutive meetings OR does not reply to three consecutive and direct emails (without justified reasons), their membership will be terminated and recruitment for a new member will begin as soon as is possible.

A Glossary of some of the Terms that are used in connection with PPIE is included in Appendix C.

5. Meetings and ways of working

The PPIE Manager and the Administrator of the PPAG will provide support for the public partners including:

· Timetabling meetings (as far in advance as possible).

· Circulating papers electronically (at least one week before the meeting).

· Liaising with researchers and healthcare professionals with regard to individual projects.

· Facilitating the meetings and setting etiquette for virtual meetings in particular.

· Documenting recommendations and decisions, and collating feedback and learning.

· Organising induction, training, development and support for PPAG members.

It is envisaged that:

Meetings will until decided otherwise be virtual and whenever that can change, will take place in central London. The PPAG will initially meet 3 monthly as a full group for a few hours business/development session. A smaller number of the PPAG members will meet as required to fulfil its purposes with researchers to discuss individual research projects.

The nominated PPIE Manager or lead researcher of a theme will convene these meetings and members who have agreed to work with that theme can sign up to the meetings if they are available at their convenience; they are expected to attend on average one in two meetings either of the PPAG or a theme in either case and their membership will be reviewed if experience shows that they are unable to do so over a period of six months.

Some interaction may also happen over email and smaller virtual meetings (e.g. feedback on documents) and the PPAG will explore other methods of communication (e.g. teleconferences and webinars).

A decision shall be made by the show of hands of a simple majority of the public partners present at a meeting which is quorate except if it involves a significant change to the ToRs in which case it shall be supported by at least 60% of such public partners and, if the Chair so decides, by secret ballot. In the event of a tied vote the Chair will have a casting vote.

At least 2 public partners from the PPAG will be permanent members of the Management Committee to be appointed by the nominated PPIE Manager for the first year and then selected by the PPAG in or about July 2021 and annually thereafter. Other public partners may attend such meetings when the nominated PPIE Manager and the chair of the Committee decide that it is appropriate for them to do so.

6. Chair

For the first year the nominated PPIE Manager will appoint one of the public partners to chair meetings of the PPAG and in or about July 2021 and annually thereafter the PPAG will select a public partner to chair meetings for the ensuing year.

7. Conflicts of Interest

Public partners are expected to declare any interests they have which conflict or may conflict with any item of business before a meeting of the PPAG or the activities of the ARC NWL and to take such action to resolve the conflict as the Chair shall decide.

8. Accountability and Review

The PPAG and its ToRs will be reviewed at least on an annual basis by the PPAG and the ARC NWL Management Committee. The impact that the PPAG and its members is/are or may be having on the Research and on the activities of the ARC NWL and the researchers will be reviewed at regular intervals and reported to the Management Committee.

At any point, members of the PPAG can ask to receive or give feedback to the PPIE Manager (or a different contact, if more appropriate) to improve the ways of working. If sensitive matters arise, the PPIE Manager may discuss a way forward.

Public partners will be expected to have an annual review of their membership by the Chair and the nominated PPIE Manager at which they can raise any point of concern and receive feedback on any relevant issue.

9. Remuneration and expenses

All members will have their public transport travel expenses reimbursed, and will be remunerated as per INVOLVE’s policy on payment of fees and expenses for lay partners. Unless the public partner is receiving more than 1000GBP from the ARC NWL and Imperial College per annum. In this instance, a separate consultancy agreement will be drawn up on a case by case basis.

10. Confidentiality

Due to the nature of Research and its potential to be confidential, public partners will be guided by the nominated PPIE Manager, other ARC NWL staff or researchers if any information or documents with which they are provided is confidential. Unless public partners are told otherwise, the content of the PPAG and ARC NWL meetings will be of a confidential nature.

All information which is of a confidential nature must be treated with strict confidence both during the term of PPAG membership as well as after the term ends. In line with the Data Protection Act 2018, members must not remove, destroy, share or discuss any confidential information inappropriately unless specifically requested to do so. The ARC NWL will keep public partners’ personal information secure and confidential at all times and their personal data will be held on a system that is restricted to ARC NWL staff and those Imperial College finance staff who are required to process payment and expenses claims.

11. Future vision

The PPAG will “launch and learn”/ “learn by doing” to co-produce the ongoing relationship between the PPAG with the ARC NWL Management Committee. The PPAG will evolve over time working with feedback from members and researchers. Over the next 12 months consideration will be given to expand the PPAG in particular to reflect the diversity of our local community.

The ARC NWL Management Committee will work with PPs and local communities to ensure the process of appointment is appropriate and people are sufficiently supported to be active, integrated members.

Appendix A

Principles to be taken into account by public partners in their activities for the PPAG

1. To foster the strategy, aims and objectives of the ARC NWL Programme

2. The need for the PPAG to embrace inclusivity, equality of opportunity and fairness

3. A commitment to listen to each other with respect and openness

4. Acknowledgement of the power differentials that exist between professionals and lay people, and a commitment to minimise them where possible

5. Clarity and transparency in all communications

6. A commitment to support equality and to challenge discriminatory practices and maintain an open-minded approach towards cultural differences and diversity in ways of working

7. The need to use language that is accessible and avoid jargon and acronyms

8. To maintain confidentiality where it is required

Appendix B

Role description with attributes desirable for the recruitment of public partners:

Have at least some of the following skills and experience

· Have knowledge and experience of the NHS, including as a patient or carer.

· Have some experience in being involved in research e.g. as a lay partner on at least one research project or being involved in a committee that reviews research applications.

· Have some experience of how groups and committees work.

· Be able to promote the principles and values of PPIE.

· Be interested in improving the health and wellbeing of the public and making it more focused on their needs.

· Bring enthusiasm to the task.

· Have good communication skills.

· Be able to handle new ideas and information, and be willing to ask questions.

· Play an active part in their local community or in a relevant group or network (e.g. a charity).

· Have a commitment to continuous learning

· Be willing to work to develop the PPAG and to improve PPIE in Research projects.

· Be willing to mentor public parters with less experience of involvement in research.

Appendix C

Glossary of Terms:

• Personal and public Involvement in research - Research being carried out ‘with’ or ‘by’ members of the public in partnership with researchers and clinicians rather than research being ‘to’, ‘about’ or ‘for’ them

• Public Engagement - Refers to information and knowledge about research being shared and discussed with the public, ideally as a two-way conversation e.g. events and social media.

• Patient or Service User - Someone who is currently receiving healthcare or has recently completed an episode of care

• Carer - Someone who cares for a person with health and/or social care needs, in this context usually an informal carer (family or friend)

• Member of the public/Citizen - Members of the public including users or potential users of the healthcare system and carers

• Lay partner - Someone who represents the views of the public. They are working in partnership with professionals in a specific context. They do not represent the views of healthcare professionals or academics

• Clinician/healthcare professional - A healthcare professional e.g. GP, doctor or nurse, who has direct contact with patients

• Researcher/Academic - An academic, someone who is currently carrying out research, in this context: health or social care

Download: Appendix A: Terms of Reference (.pdf)

Appendix B: The Exchange Network

What is the Exchange Network?

•  A network of people from different backgrounds with a shared interest in improving healthcare, involvement, learning and leading together

•  A facilitated space that acknowledges and seeks to equalise power differentials between patients, carers, service users, researchers and healthcare professionals in order to learn collaboratively

•  A personal development opportunity

How did it develop?

The Exchange Network emerged from the experience of working with patients, carers and service users in the NIHR CLAHRC NWL programme from 2009 - 2013 who told us that they preferred a more collaborative approach that recognised and valued their individual skills and experiences. The network was developed with patients, carers and service users.

It is underpinned by the principles of co-production in particular reciprocity and the desire to blur boundaries.

Purpose

The overall purpose is to promote high value, productive conversations and relationships that lead to new insights and ideas that network members can act on and take with them to apply in other situations.

What will it achieve?

We hope that members leave each meeting with something new. This may be a new contact, idea or reflection which they can use to progress areas they are interested in or activities they are responsible for.

Operating principles and practices for Exchange Network meetings

Participants are helped to clearly delineate between conversations based on the mind-set that gives rise to debate, discussion and dialogue.

The focus of the Exchange Network is on dialogue. It is grounded in a mind-set that:

•  Suspends judgement, comes with an open mind

•  Deeply listens – to understand and find meaning and agreement

•  Is focused on inquiring based on a spirit of discovery and genuine interest

•  Uses powerful questions

•  Is collaborative – working together towards common understanding

•  Explores others and one’s own assumptions, beliefs, attitudes for re-evaluation

•  Acknowledge that others’ thinking can improve one’s own

•  Is strength based and solution focused

•  Is focused on discovering new options

To support the development of dialogue participants use a tool called The Ladder of Inference (Chris Argyris). This describes the thinking process we go through (often unconsciously) to get from a fact to an action or decision. Using the ladder supports participants in:

•  Becoming more aware of your own thinking and reasoning (reflection)

•  Making your thinking and reasoning more visible to others (advocacy)

•  Inquiring into others' thinking and reasoning (inquiry)