PSP074: Public Research Champions

The Public Research Champion programme is coordinated by the Research Delivery Network (RDN) Coordinating Centre (CC) and managed by the Regional Research Delivery Networks (RRDNs) using these guidelines. 

The Public Research Champions programme contributes to the following NIHR wide initiatives:

Best Research for Best Health: The Next Chapter (NIHR, 2021) sets out a commitment to partnering with patients, service users, carers and communities to improve the relevance, quality and impact of research. The Public Research Champion Programme contributes to the following Strategic Objective within Best Research for Best Health: 

• Strategic Objective 1: Building on learnings from the research response to COVID-19 and supporting the recovery of the health and social care system: Build on heightened awareness of research as a result of COVID-19 to strengthen our engagement of people and communities, including through better use of digital technologies and by reaching out more effectively to communities under-served by research.

The NIHR Outcomes Framework describes the outcomes that NIHR is seeking to achieve to fulfil its mission of improving the health and the wealth of the nation through research. The Public Research Champion Programme contributes to the aim that the public are valued partners in research, improving its reach, quality and impact. The programme achieves this by contributing to the following outcomes identified within the NIHR Outcomes Framework: 

• 3.1 NIHR communicates with the public to raise awareness of and engagement with health, public health and social care research

• 3.5 Opportunities for participation in research studies are an integral part of everyone's experience of health and social care services

The UK Standards for Public Involvement set out what good looks like in patient and public involvement in health and care research. While designed for involvement, the principles apply to patient and public engagement too, though some of the approaches proposed may need adapting to work for engagement activities. RRDNs are expected to implement the standards in the way that they plan, design and organise public engagement and involvement activities, including the Public Research Champion role.  In particular, the Public Research Champion role is designed to support the standard around inclusivity:

• Standard 1: INCLUSIVE OPPORTUNITIES. Offer public involvement opportunities that are accessible and that reach people and groups according to research needs.

Research suggests that a lack of public awareness around clinical research is a barrier to participation in studies (Reynolds, 2011 and Boyle et al, 2011, for example). This lack of awareness can lead to challenges including healthy volunteers not putting themselves forwards for research studies; patients and carers who could participate in a study not doing so because they don’t know to ask or how to seek out research opportunities and patients invited to participate by their doctors hearing about health and care research for the first time at that moment, thus making an additional hurdle in the recruitment conversation. 

It is important to address this challenge since recruiting participants into the research studies rapidly is a valuable enabler for the efficient and effective delivery of research. 

Additionally, many groups continue to be under-served by research.  This leads to a range of issues including an exacerbation of health inequalities and reduced usefulness of study results (see INCLUDE 2020). 

The Public Research Champion programme is designed to address the problems of low public awareness and lack of diversity in research participants by providing a nationally-coordinated and assured way to help more of the public and patients to know about health and care research. By talking about research in everyday spaces and places where people are - GP surgeries, hospital waiting rooms, community groups, patient groups, social media and amongst family and friends- we aim to make sure that everybody knows what health and care research is, what it involves and why it matters.

The Public Research Champions Programme is connected to the Research Ready Communities programme which uses a participatory co-design approach to boost research awareness amongst under-served communities.

The aim of the Public Research Champions initiative is to build a bigger and more diverse research-ready patient and public community and help reduce barriers to research participation for the public, to support effective and efficient research. 

This is done through the objective of recruiting and supporting members of the public who are passionate about the importance of health and care research to: 

1. deliver engagement activities that build public awareness of and interest in health and care research, especially amongst under-served groups- this can be through the Research Ready Communities (RRC)  programme or in addition to the activities within the RRC programme

2. deliver engagement activities with clinical and research staff to raise their awareness of public experiences, barriers and enablers around participating in research to support the effective engagement of research participants

The Research Ready Communities also aims to build research awareness amongst under-served communities. The two programmes are closely connected and should be planned and implemented in a coordinated manner by RRDNs, in particular:

• Research Ready Communities can be used to provide a structure and framework for engaging Champions from  under-served communities. The offer of a structured community development approach provided by Research Ready Communities is a more effective way of engaging public partners from under-served communities than by simply advertising the generic Research Champions role. Therefore, RRDNs should use Research Ready Communities as part of their recruitment strategy for Research Champions

• Community Champions from the Research Ready Communities programme should be invited and supported to join the RRDN's general pool of Research Champions once they complete the initial Research Ready Communities activity. This will help RRDNs diversify their volunteers and build sustained relationships with public partners from a range of communities

• Alongside Research Ready Communities, RRDNs should continue to run their general Research Champions programme, offering any interested and eligible public partners follow on support to help raise awareness of research

Public Research Champions are volunteers from across England and include patients, carers, members of the public, and people who have taken part in a research study before, as well as those who haven’t. Something that they all have in common is that they are passionate about getting more people involved in research so that we can develop better care and treatment for everyone. 

There is a standard Research Champion role description and induction that all Champions follow. Additionally, Research Champions can opt if they wish to, to adopt specialised Champion roles in addition to their general volunteer role. There is dedicated training and support provided for specialised roles which should be delivered in addition to the standard Research Champion Induction. The specialised roles that are currently coordinated at a national level are:

• Join Dementia Research  (JDR) Champions 

• Community Champions - see Research Ready Communities programme guidance 

RRDNs may develop other specialised Champion roles locally if they wish to. 

• RRDNs Annual PPIE Plans should incorporate key milestones and activities for the delivery of the Research Champions programme and demonstrate strategic and operational alignment with the Research Ready Communities programme.   The plan should in particular show how the RRDN will engage Research Champions from under-served communities and it is suggested that this should be primarily through the delivery of Research Ready Communities, with RRDNs only undertaking any additional recruitment activities with under-served groups as capacity and resource allows. 

• Where Delivery organisations wish to recruit and engage Research Champions, RRDNs should provide a programme of support for them.

• In addition to engaging Research Champions from under-served communities through the Research Ready Communities programme, RRDNs should run a general programme of recruitment, induction and support for Research Champions from any community. 

• Public Research Champions can be recruited by RRDNs or Delivery organisations, and every Public Research Champion is required to be registered with one of these organisations. While some Public Research Champions may work with multiple organisations, there should be a clear record of, and Public Research Champions themselves should be clear about, which organisation they are registered with.

• It is the responsibility of the organisation that the Public Research Champion is registered with to: 

  1. issue the Public Research Champion with the role description;

  2. provide an induction that meets the standards set out in this document (see below) or organise for their participation in an RRDN induction session (if offered);

  3. offer Public Research Champions the chance to feedback about their experience at least annually through the RDNCC annual public partner survey;

  4. contact Public Research Champions who have been inactive for 12 months to see if they wish to continue their involvement and remove them from the local Research Champion register if not, or if they do not respond.

To be considered as managing the programme for reporting purposes and to ensure the safe implementation of the programme, any Delivery organisation intending to recruit patients and/or members of the public in the role of Public Research Champion must complete and return to the RRDN a Public Research Champion Partner Agreement Form. While RRDNs can adapt the template provided by the RDNCC, as a minimum any locally adapted forms must set out responsibilities for inducting Public Research Champions, protocols on safeguarding, and contact details of their organisation’s contact for the Public Research Champion programme.  There is separate guidance for Community Champions engaged via the Community delivery organisations via Research Ready Communities.

To become a Public Research Champion, members of the public must complete a Public Research Champion Sign Up Form or registration form, which can be locally designed. If Public Research Champions are recruited by a Delivery organisation that already has a Volunteer Registration Form (or similar), the Public Research Champion Sign Up Form should be issued with the volunteer form or incorporated within it to explicitly state that the volunteer wishes to register with the Public Research Champion programme.

The Public Research Champion programme is a voluntary initiative for members of the public and patients. The induction and role are designed for those with limited knowledge of research and to enable a patient or public perspective to be brought to engagement activities. It is therefore not suitable for members of the research or clinical workforce.  

All Public Research Champions, including general and those in specialised roles (e.g. JDR Champions) must receive an induction that meets the standards in this section. 

To be counted as a Public Research Champion for reporting purposes, individuals must have had an induction. This is a minimum standard of good practice in engagement and involvement. 

RRDNs can determine the content, length and format of induction sessions, options could include 1-2-1 conversations and group training sessions etc. If Delivery organisations wish to run in-house inductions for Public Research Champions, RRDNs must support these inductions and provide materials for this as required.

The minimum content that must be covered in the induction is: 

1. An introduction to health and social care research 

2. Ways to take part in research and potential benefits to taking part 

3. An introduction to the NIHR and its role in research

4. Inclusion in research and under-served groups  

5. Methods for engaging and talking to people about research 

6. An introduction to Be Part of Research and Join Dementia Research 

7. Overview of the NIHR and own organisation e.g. RRDN or Delivery organisation

8. Overview of the national Public Research Champion role description

9. Induction to the data privacy and safeguarding protocols relevant to their role and signing of the Data Privacy and Confidentiality Agreement

10. Induction to recognition and payment policy and processes and to expenses protocols how to claim expenses and what expenses are covered

11. Introduction to the staff contact for the Public Research Champion during their volunteering 

12. Inclusion in research and under-served groups  

13. Signpost to People in Research website to find out about opportunities for involvement in health and social care research

14. Signpost to the MOOCs: What is health research? and Improving Healthcare through Clinical Research 

RRDNs are encouraged to add local content to the induction that explains local opportunities and structures and provides training and information relevant to the types of Public Research Champion activities happening across the area/organisation. 

Public Research Champions must be provided with a written summary of the main information from their induction. This can be digital. The RDNCC has created a Public Research Champion Information Pack that RRDNs can use if they wish. 

Public Research Champions must sign a Data Privacy and Safeguarding Agreement that as a minimum covers the items in the template agreement in the Public Research Champion toolkit before they undertake any volunteering activities, or join the Online Public Research Champions Community. RRDNs must store signed agreements locally, in a GDPR-compliant manner.

Inducted Public Research Champions should be given the option to join NIHR Learn  and should be registered by the RRDN if they are interested.

Public Research Champions who have a special interest in promoting dementia research as part of their role must have JDR-specific training. This is an online training package to be completed at home or, if assistance is required, as part of the induction training

Community Champions must receive the Research Ready Communities induction. This should be aligned with the Research Champion Induction to allow Community Champions to move into the Research Champion role if they wish to do so without the requirement to complete two inductions. 

Community Champions moving into the Research Champion role should be provided with the Research Champion role description to ensure they are aware of the differences between the roles. 

It is expected that in most areas, Public Research Champion opportunities will be both proactive and reactive. 

• Proactive Public Research Champion opportunities are part of the planned engagement projects that RRDNs will set out in their Annual Plans, and which are designed to engage specific groups with research. 

• Reactive Public Research Champions opportunities are those that arise during the year that can’t be planned for and which RRDNs and/or Delivery Organisations support Public Research Champions to participate in. Examples are contributing to a national advisory group for the Coordinating Centre, sharing a story with the media, speaking at a local or national event and so on. 

In all cases, Public Research Champions should be supported to make an informed decision about whether an opportunity is right for them. To do this, their point of contact, whether in the RRDN or Delivery Organisation, should brief them about the opportunity, providing information about: what the opportunity is, when and where it is taking place, any payment associated with it, what their role would be, how they will be supported. 

A conversation should also be held about the possible risks and benefits for them in taking part e.g. a risk with a media story could be that it will stay online indefinitely, and a benefit could be a positive feeling from helping others find out about health research. 

Public Research Champions should be provided with support and training for any opportunities they decide to participate in. As a minimum, support should include a brief and debrief. If the opportunity involves new skills then training should be provided. 

While the Public Research Champion role is voluntary, other forms of recognition (besides payment) should be provided, and RRDNs (or their host organisations) should have a Recognition of Patient and Public Representatives Policy (or similar). Forms of recognition could include thank you notes, celebration events/meals, and certificates.

In situations where Public Research Champions are invited to be involved in activities outside of the activities outlined in the Research Champion Role description and which are considered to be public involvement activities, they will be considered to be ‘RDN Public Partners’. In these circumstances, they will be provided with a new role description to reflect the requirements of the role and will be offered a recognition payment in line with national guidance. 

Community Champions recruited as part of Research Ready Communities should be recognised as outlined in the guidance for that programme. 

To support engagement, it is encouraged that RRDNs send communication to all their Public Research Champions on at least a quarterly basis.

RRDNs should determine the best Public Research Champion programme design for their local context. For some this may, for example, involve initially working mostly with community groups to understand more about local barriers to participation in research for underrepresented groups, but all RRDNs are likely at some point to need to work closely with their Delivery organisations.

Delivery organisations can be involved in the Public Research Champions programme through:

• Directly recruiting and supporting Public Research Champions as recognised volunteers within their organisation. NOTE: any Delivery organisations that recruit and support Public Research Champions must have completed and returned a Public Research Champion's Delivery organisation Agreement Form before being considered as supporting the programme.

• Offering opportunities for Public Research Champions recruited by the RRDN to come into their settings to engage patients, the public and/or workforce. 

• Participating in learning activities contributed to by Public Research Champions such as talks about their experiences of participating in research and so on.

The Public Research Champions initiative has been designed to help Delivery organisations evidence their commitment to promoting a research-active culture, which is a requirement of both the NHS Long Term Plan and the CQC Well-Led Framework. to fulfil these expectations, delivery of the Research Champion programme helps delivery organisations to demonstrate that they:

• Enable staff to deliver research

• Promote research participation across patients and carers 

• Involve patients and carers in your research initiatives

The Public Research Champions initiative has been designed to help you evidence that you are promoting a research-active culture.

• The NHS Long Term Plan reinforces NHS England's long term commitment to integrating research in health and social care. NHS England intends to ensure one million people are registered to participate in health research by 2023/24 and will be using digital platforms to help patients and the public find out and register for research (NHS Long Term Plan 3.112, 2018). This means more patients and carers than ever will be expecting their health and social care providers to be ready to answer their questions about clinical research and support their active involvement in research.

• The Public Research Champions initiative can support you in embedding this research-active culture in your organisation. By supporting you to recruit and train volunteers who can help patients and carers understand clinical research and put themselves forward to participate.

RRDNs should make clear to all Public Research Champions (whether recruited directly by the RRDN or through Delivery organisations) that they are part of a national network of volunteers, coordinated by the NIHR and as such, by volunteering locally they become eligible to participate in national opportunities to speak out and influence health and care research as Public Partners

The RDNCC will help to disseminate opportunities for Public Partners in national NIHR activities throughout the year. Such opportunities may be within the RDNCC e.g. presenting at staff events and inductions or from across the wider NIHR.  Such opportunities will be communicated to RRDNs by email and where RRDNs have eligible local public partners who are interested in such opportunities, they are expected to engage and support them to participate and apply.  In all national opportunities, the costs of travel and other reasonable expenses and any recognition payments will be covered by the organisation hosting the opportunity i.e. not the RRDN.

The RDNCC will work together with RRDNs in identifying, and implementing any future development and improvement of the Public Research Champions programme and ongoing support for existing Champions across the RRDNs. The RDNCC Public Partnerships team will maintain an easy-to access suite of resources to support RRDNs in implementing the programme guidelines as set out in this document, via the RDN Public Involvement Toolkit. 

The RDNCC will support RRDNs with the Public Research Champion programme by:

• Supporting RRDNs with the planning of their Public Research Champions programme, and assisting RRDNs with considering how the programme can be tailored to their local context and opportunities

• Developing and maintaining an easy-to-access suite of resources to support RRDNs in implementing the programme guidelines as set out in this document

• Providing support and shared learning around the programme delivery through the monthly RDN Public Engagement Forums

• Showcasing case studies and best practice tools to assist in the measurement of impact for the Public Research Champions programme.

RRDNs can access support with the Public Research Champions programme via the RDN PPIE Community of Practice  on Google Spaces. Please check that all relevant members of your team have access to this community and that you have email alerts set up so that you know when a post has been added. 

If you have any questions about Public Research Champions you would like to discuss please contact the PPIE team at rdncc.ppt@leeds.ac.uk, prefixing the subject header with 'Public Research Champions'. 

The organisation with whom an individual Public Research Champion is registered as a volunteer (this could be a Delivery organisation or the RRDN) is responsible for ensuring that the Public Research Champion are aware of, and supported to comply with the relevant policies and protocols for volunteers within their own organisations. This includes policies on, but are not limited to:

• Safeguarding

• Data Privacy and Confidentiality

• Health and Safety

• Expenses, payment and recognition

Organisations registering Public Research Champions should make them aware of such policies as part of their induction. Any breaches of such policies should be dealt with in accordance with the organisation’s own processes.

That said, because the Public Research Champion programme is an NIHR initiative we retain responsibility for the safe and high-quality implementation of the programme, regardless of whether it is a Delivery organisation that actually registers a Public Research Champion as a volunteer. 

RRDNs need to ensure they can demonstrate they have provided reasonable support to Delivery organisations who are recruiting Public Research Champions to mitigate any safety, quality or reputational risks that may arise.

If an RRDN is aware of another possible risk not included here this should be raised via email to rdncc.ppt@leeds.ac.uk.

RRDNs are responsible for informing the RDNCC of any issues they are aware of involving a Public Research Champion that they believe immediately constitutes, or could constitute in the future, a risk to the reputation of the NIHR. They should do this by contacting the National Head of Public Partnerships (RDNCC) - Angela Polanco at angela.polanco@nihr.ac.uk at the earliest opportunity. 

The section below sets out some of the risks that may occur in the Public Research Champions programme and activities to be taken to mitigate the risks.

Risk: Public Research Champion shares information outside the scope of the role with the public and in the process presents reputational risk to NIHR or Public Research Champion behaves inappropriately while in their role e.g. on a stall, in a conversation and presents reputational risk to NIHR

Mitigation:

• National role description provided in plain English to help ensure all Public Research Champions understand their role. RRDN guidance and Delivery organisation pack explains the importance of using the role description when registering new Public Research Champions.

RRDNs and partners are provided with a template induction guide for Public Research Champions explaining their role and which includes actions to take if a member of the public asks a question they can’t answer or is outside the scope of their role. 

Risk: Public Research Champion behaves in a way that puts their own or public safety at risk

Mitigation:

• Public Research Champion inducted in relevant health and safety policies by the organisation that registers them as a volunteer.

• RRDN guidelines and partner agreement form make clear that for any new activity Public Research Champions must be given a relevant health and safety induction and informed about anything they must not do.

• Staff present at any event should retain responsibility for health and safety and ensure all risk management required by their host organisation policies is carried out.

Risk: Public Research Champion breaches data privacy of public by how they handle any contact information they collect or manage, the information they are exposed to, or by being given access to information they shouldn’t be

Mitigation:

• A Partner Agreement Form makes clear the duty for Delivery organisations registering Public Research Champions to ensure compliance with their own GDPR protocols at all times.

• Template confidentiality form signed by the volunteer should be used and signed as part of the induction process. 

• An information pack for Delivery organisations explains what activities a Public Research Champion can do and makes clear the boundaries of the role.

Risk: Public Research Champion becomes unwell while undertaking an organised Public Research Champion activity (i.e. not one they self-initiated) e.g. due to an existing episode or an accident at an event

Mitigation: 

• The organisation that is coordinating the activity and that is present on the day or the point of contact for the Public Research Champion on the day should ensure they have, or know how to quickly access, emergency contact details and any medical and allergy information for the Public Research Champion attending the activity

• Public Research Champions engaging in any activity should be given clear details of who their point of contact is for that specific activity (it may be someone different to their usual volunteer coordinator) and what to do if they need to reach them.

Risk: Public Research Champion doesn’t understand the voluntary nature of the role and expects payment

Mitigation: 

• National role description and payment information provided and organisation registering the Public Research Champion to speak this through during the induction, sign-up process.

Risk: Patient or member of the public makes a disclosure to Public Research Champion while the Public Research Champion is speaking with them about health research

Mitigation: 

• All existing and new Public Research Champions are required to take part in a Public Research Champion induction which sets out clear protocols for what to do in such a situation.

The Disclosure and Barring Service helps employers make safer recruitment decisions each year by carrying out DBS checks (previously known as CRB checks) that result in certificates being issued to an individual. Employers can then ask to see this certificate to ensure that they are recruiting suitable people into their organisation. DBS also maintains the adult’s and children's Barred Lists and makes considered decisions as to whether an individual should be included on one or both of these lists and barred from engaging in regulated activity. 

Whether a Public Research Champion needs a DBS check depends on the types of activity they will be doing in their role and which patients and the public they will be engaging with through those activities. As the national role description for Public Research Champions doesn’t specify the exact activities and groups a Public Research Champion might engage with, RRDNs will need to make decisions locally about when a DBS may be required. The Disclosure and Barring Service has extensive guidance on eligibility for DBS checks, and the different levels of checks that can be run- as well as a tool for helping work out if an employee or volunteer needs a check. 

The DBS has a phone line that anyone can call for guidance on DBS checks. RRDNs are encouraged to use this service if they need advice because the RDNCC (meaning both the RDNCC Public Partnerships team and all other functions) do not have specialist knowledge about the DBS.

Some Delivery organisations, especially Trusts, may require that any volunteer working on their premises needs a DBS check. This is understandable due to the vulnerability of patients the Public Research Champions may come into contact with while volunteering there. Therefore, where Public Research Champions are recruited by Delivery organisations, those organisations should follow their own policies on DBS checks. If RRDNs are recruiting Public Research Champions that they wish to ‘place’ within settings like hospitals it is worth checking if those settings will require the Public Research Champions to have DBS checks to do volunteering activities on site. This may be variable as some Trusts may state that if the Public Research Champion is supervised by staff at all times, such a check isn’t needed. RRDNs will need to work within the policies of the organisations they are working with. 

The RDNCC team can provide initial guidance and advice on DBS checks, however, for more complex enquiries, the team will suggest the RRDN contacts the DBS itself, through the details linked to above.

Angela Polanco

National Head of Public Partnerships (RDNCC)

Email: angela.polanco@nihr.ac.uk 

Gwynneth Cracknell

Senior Manager for Public Partnerships (RDNCC)

Email: gwynneth.cracknell@nihr.ac.uk

CQC: Care Quality Commission

CRB: Criminal Records Bureau 

CLAHRC: Collaborative Leaderships in Applied Health Research and Care 

DBS: Disclosure and Barring Service 

DHSC: Department of Health and Social Care 

GDPR: General Data Protection Regulation 

GP: General Practitioners

MOOCs: Massive Open Online Courses 

NHS: National Health Service

NIHR: National Institute of Health and Care Research 

POF: Performance and Operating Framework 

PSP: POF Support Page

PPIE:  Patient and Public Involvement and Engagement 

RDN: Research Delivery Network (RDN)

RDNCC: Research Delivery Network Coordinating Centre (RDNCC)

RRC: Research Ready Communities

RRDN:  Regional Research Delivery Network

There are many existing tools and guides around public engagement and involvement in research that RRDNs may find useful to consult when planning their Public Research Champion programmes. Please visit the RDN Public Involvement Toolkit for more information and links.

Version number: 5.0

Effective from date: 01 October 2024 

Content revisions:

• Updates to language and terminology LCRNs to RRDNs and Partner organisations to Delivery organisations

• Removal of out of date guidance and links