NIHR Clinical Research Facility: Sheffield

Our vision is to embed Patient and Public Involvement and Engagement (PPIE) across the lifecycle of clinical research that we conduct, from informing research priorities to study design and through to how we disseminate results. We want to ensure the trials we deliver serve the needs of patients, the community and the NHS, and want our findings to be communicated effectively.

PPI is at varying levels of activity and maturity throughout our growing research organisations in Sheffield. We have 18 well established Patient Panels at our NHS Trust and community links built around specific projects where high-quality involvement and sustained partnerships have demonstrated substantive impacts, for example:

• The co-design of the HeadUp collar for neck weakness in motor neurone disease

• Including minority accents and culturally and linguistically diverse speakers in the development of the natural language processing diagnostic tool, CognoSpeak™

• Co-creating the Take Part In website to provide accessible vaccine information

• Co-designing dementia friendly and wheelchair accessible receptions in the CRF

We have also identified some areas for improvement. Current Patient Panels often lack the diversity representative of the patient population in Sheffield. New panels are needed for underserved groups. Processes for gathering feedback and updating patients on study progress, including those who were involved at earlier stages in shaping research plans, need improvements, as does the accessibility of research more broadly.

We plan to learn from best practice examples and the UK Standards for Public Involvement to: (1) inform our approach; (2) provide training, guidance and resources for involvement throughout the research cycle and (3) to develop an outreach programme to widen research awareness.

Over the next 5 years we will build on our existing involvement capacity, fostering new links with Primary Care Sheffield and a core Equality, Diversity and Inclusion strategy to widen research awareness and involvement to include more underserved groups in the region. We aim to diversify, broaden, and deepen patient and public involvement in our research.

1. Maintain and strengthen involvement through our patient panels and existing links

2. Improve how we gather and use participant feedback to shape research delivery

3. Improve the visibility of research and accessibility of research outputs

4. Educate and engage staff in patient and public involvement and engagement (PPIE)

5. Increase research awareness throughout South Yorkshire and the region

6. Gain an understanding of barriers to taking part in research locally

7. Identify representative public research priorities that align with our expertise to feed into future funding applications

The National Institute for Health and Care Research (NIHR) Sheffield Clinical Research Facility (CRF) and NIHR Sheffield Biomedical Research Centre (BRC) are part of the NIHR, hosted by Sheffield Teaching Hospitals NHS Foundation Trust (STH) in partnership with the University of Sheffield (UoS) that work together delivering clinical research locally.

The BRC develops academic science emerging from the University of Sheffield into clinical research in the themes of Neuroscience, Infection and Immunity, Cardiovascular Disease, and Imaging and Engineering.

The CRF offers two purpose-built, dedicated research facilities in the Royal Hallamshire and Northern General Hospitals where high-quality clinical research is conducted, with the capacity to care for participants on a day and overnight basis. The CRF recruits patients and healthy volunteers into clinical trials across a broad range of health conditions, with expertise in early-phase and complex studies including new treatments that are being tested for the first time in humans.

Together, our work helps to generate new treatments, find new and better ways to deliver clinical services, and improve patients’ lives. The valuable contributions made by patients and members of the public make these advances in healthcare possible.

This strategy was developed with input from all key stakeholders in both the BRC and CRF including all research theme leads and patient representatives.

Abbreviations used in this strategy are listed below:

BRC: Biomedical Research Centre

CRF: Clinical Research Facility

EDI: Equality, Diversity and Inclusion

NIHR: National Institute for Health and Care Research

PPI: Patient and Public Involvement

PPIE: Patient and Public Involvement and Engagement

PPIEP: Patient and Public Involvement, Engagement and Participation

STH: Sheffield Teaching Hospitals NHS Foundation Trust

UoS: University of Sheffield

Please note: This strategy has been produced alongside our joint Equality, Diversity and Inclusion (EDI) strategy which provides more detail on our plans for activities related to EDI.

• Help to maintain and grow stable patient panels for research intensive areas

  • • Provide funds, guidance and administrative time to support the operation of patient panels, including assisting with grant applications for external continuity funding

    • Support recruitment for new members with materials for distribution through clinics and advertisement through charities and public forums

    • Support the set-up of new panels to meet research needs

    • Invite research nurse membership on to patient panels to add value to discussions and further incentivise patient attendance

    • Rotate members of staff to provide regular brief study updates

    • Require trainees to sit-in on panels as part of PPIE training

• Fund an innovative PPIE activities call

  • • To stimulate initiatives outside of the remit of our patient panels

    • A rolling call with annual budget allocation of up to £4000

• Improve the quality and utilisation of the Participant in Research Experience Survey

  • • Regular review in operational group meetings and daily huddles

    • Improvement projects will be put into place to address feedback

    • Provide analysis and feedback to patient panels and groups

    • Contribute to the national Participant in Research Experience Survey advisory group to provide new and more accessible versions reflecting perspectives from a broader range of people

• Develop a programme of community outreach activities to engage with communities that are currently under-represented in research in Sheffield

  • • Initiate a series of research conservations using introductory topics such as exploring attitudes to the use of anonymised health data in research, to begin two-way dialogues on research where we can also listen to community concerns to explore further

    • Work with Primary Care Sheffield to invite patients through GP surgeries to take part in research conversations

    • Engage with community groups in under-served areas; Darnall Wellbeing, Darnall Dementias Groups, Parson Cross Forum to invite people to join research conversations

    • Build on the links we have with the Israac Somali Association, Parkinson’s UK community links and Deep End primary care practices

    • Develop involvement around carehome-based project e.g., testing a fall prevention device

• Host events and open days promoting research involvement opportunities

  • • Hold a joint public launch event

    • Contribute to facility open days and public engagement events

    • Ensure BRC and CRF representation at public engagement events

    • International Clinical Trials Day

    • NHS75 activities collaboratively delivered with our joint Clinical Research and Innovation Office and other local NIHR infrastructures

    • Parkinson’s awareness events delivered in collaboration with the local Parkinson’s UK branch over a 2-year plan

• Develop our online presence

  • • The BRC has launched a new website www.sheffieldbrc.nihr.ac.uk

    • The CRF will update their website pages with more co-created content

    • Publish lay research summaries on our websites and Twitter

    • Co-ordinate on Tweets from @SheffieldBRC and @CRFSheffield

• Co-design accessible dissemination materials in a variety of formats

  • • Patient experience videos

    • Infographics to support research conversations and meetings

    • ‘Images tell a thousand words’ initiative using impactful medical images to help patients understand their disease

    • Develop an accessible, plain English template to describe research outputs with the local NIHR Clinical Research Network

    • Develop text and graphics to make outcomes from the Participant in Research Experience Survey as accessible as possible for a broad audience

• Deliver bespoke training sessions to all BRC Training Academy members

  • • Incorporating the UK Standards for Public Involvement

    • Providing guidance to implement high-quality PPIE in their research

• Review and update PPIE sections of inductions for new staff

  • • Offer training for all members of the BRC and CRF

• Encourage those new to PPI to sit in on patient panel meetings to observe involvement in action

• Provide PPIE training for Nurse, Midwife and Allied Health Professional trainees

• Signpost to PPIE and Equality, Diversity and Inclusion (EDI) training for patient/public contributors and researchers available through our host institutions and the NIHR

• Develop internal training sessions for patient contributors

• Help to develop the Neuroscience Hotsummaries training initiative to help Early Career Researchers develop their skills in writing plain English research summaries with patient and peer reviews

• Work with disease charities for access to PPI volunteers and to deliver collaborative initiatives. Examples of activities include:

  • • Delivering a Parkinson’s awareness event and outreach satellite activities with the local Parkinson’s UK branch

    • Surveying Pulmonary Hypertension Association members

    • Motor Neurone Disease (MND) Association local branch given annual MND research updates

• Work with representatives from local NIHR infrastructures and Sheffield Teaching Hospitals to develop and deliver joint PPIEP/EDI strategic activities

  • • Maintain representation at joint working group meetings and joint PPI Chair/Coordinator meetings

• Actively represent the BRC and CRF within the national NIHR BRC and CRF PPIE Leads networks

  • • Participate in national workstreams related to PPIE to share best practice

    • Build a Northern NIHR BRC-CRF PPI/EDI Partnership

• Trial and evaluate the Parkinson’s UK ‘Staying connected with your participants’ toolkit to maintain engagement with participants throughout the research pathway

• Form a patient Executive group with patient and public representatives to reflect each BRC research theme and the wider research activities of the Trust

  • • BRC and CRF Executive board members will attend and take time to explain matters thoroughly to enable patient and public views to feed into Executive board decisions more effectively

    • The patient Executive group will help to advise and oversee the development and implementation of the PPIE strategy

    • Contribute to reviewing funding applications for PPIE budget

• Invite patient representatives to attend the BRC and CRF Executive committee and operational group meetings and pair with academic PPIE leads for research themes

• Embed the national standards for involvement in the BRC’s PPIE culture

  • • Describe in training and presentations for the BRC corpus

    • Highlight projects where standards are particularly emphasised that can be used to demonstrate and exemplify the standard(s)

• Showcase best practice and positive impact examples through online media, public engagement, and networking events

  • • Develop impact cases for online publication and dissemination

    • Using Great Ormand Street Hospital BRC PPI Impact cases as a model for online dissemination

Appointments

• Appoint joint BRC/CRF PPIE Officer to lead on delivering the strategy

• Appoint PPIE Champions for each BRC research theme

• Appoint Executive patient representatives

Documents

• Provide templates for terms of reference, non-disclosure agreements, recruitment flyers, minutes and guidance for patient panels

• Implement rolling analysis of Participant in Research Experience Survey responses and actions

• Launch rolling call for innovative PPIE initiatives outside the remit of patient panels

Engagement

• Initiate a programme of outreach activities in consultation with key stakeholders

• Present PPIE to academic directorates and University departments

• Hold a public open day event

• Contribute to local engagement events including International Clinical Trials Day and NHS75

Digital

• Launch www.sheffieldbrc.nihr.ac.uk and update www.sheffield.crf.nihr.ac.uk

Collaboration

• Invite Northern BRC and CRF PPIE Leads to discuss collaborative activities

• Maintain attendance at Sheffield Joint PPI Group

Training

• Deliver PPIE training to all BRC PhD students and clinical research fellows, agreeing a plan for PPI with supervisors

• Review and update training package given to all CRF new starters

• Deliver PPIE training to Nurses, Midwives and Allied Health Professionals (NMAPs) and patient representatives

Review

• Reflect on learning from implementation to date to refine objectives going forward

• Review community research conversations to inform outreach activities going forward

• Develop at least one project arising from community research conversations

• Develop improvement projects arising from the Participant in Research Experience Survey

• Collate impact examples, developing case studies for dissemination and publication

Collaboration

• Progress collaborative activities with Northern BRC PPIE Leads, potentially holding a regional event to celebrate and thank patient and public volunteers for taking part and highlighting PPIE opportunities

Training

•  Deliver PPIE training session for new cohorts of academy members and NMAPs

Review

• Annual strategy review, reflecting on learning from implementation to date to refine objectives going forward

• Summarise learning from community research conservations

Impact

• Disseminate learning and impact examples through the NIHR PPIE Leads network and local collaborators

• Contribute to PPI informed new versions of the Participant in Research Experience Survey

• Distribute plain English templates for accessible communication of research outcomes

• Publish our top PPIE impact examples online

The BRC and the CRF each have their own budget for PPIE for hosting, rewarding and paying expenses to public contributors. The BRC has funds to support the ongoing operation and set up of new patient panels in a number of areas where greater capacity for involvement is needed from the research themes. The BRC core non-pay budget will in part fund a call for innovative PPIE initiatives that fall outside the remit of the patient panels.

The BRC and CRF will both contribute to outreach activities such as research conversations and engagement events.

Patient Panels

Our local patient panels are integral to patient and public involvement in research across STH and UoS. There are currently 18 such panels that our joint Clinical Research and Innovation Office (CRIO) help to co-ordinate and list on their website. These panels are variably funded through grant awards, chaired and administered by staff working within either STH or UoS.

We will support BRC and CRF interaction with these panels by:

• Providing an uplift in funding in a strategic way to groups with growing demand

• Promote sustainability by reminding researchers to include some costs for refunding patient panels that were involved at the pre-award stage in applications

• Support groups with recruitment materials, accessible information and webpages

• Helping researchers to engage with panels from the earliest stage

• Support CRF staff to provide study updates and relate patient experience feedback back to panels that were involved in shaping the research

• Supporting training for panel members and research staff

• Encouraging those new to PPIE to sit in on panel meetings as part of training

• Increase research nurse and allied health professionals involvement

STH / UoS collaborative PPIE group

The PPIE leads from Sheffield NIHR infrastructures (the BRC, CRF, Clinical Research Network, Devices for Dignity MedTech Co-operative), and the Clinical Research and Innovation Office (CRIO) jointly funded by STH and UoS, meet regularly to work together on delivering joint events such as International Clinical Trials Day and NHS75 activities, co-ordinate on communications output for research results and national research awareness campaigns, share learning, and develop a unified approach to outreach and research visibility in the Trust.

National NIHR BRC and CRF PPIE Leads Networks

Meeting attendance will be maintained by the joint BRC/CRF PPIE Officer.

Northern BRC/CRF PPIE Leads

We aim to develop collaborative activities with the Northern BRC and CRFs in Leeds, Manchester and Newcastle, to promote research in a co-ordinated way in the North.

The joint BRC and CRF PPIE Officer will lead on delivering the PPIE strategy. They will attend the monthly BRC theme and CRF operational meetings as well as the BRC and CRF quarterly Executive meetings and the Patient Executive group to join up the implementation of the PPIE strategy across our infrastructures.

The PPIE Officer will work closely with the Equality, Diversity and Inclusion senior research fellows appointed within the BRC, in the development and implementation of an outreach programme to increase research awareness and engagement in underserved communities and to diversify PPIE to try to improve representativeness in involvement and research participation.

Additionally, they will work within our collaborating structures, maintaining a presence at the collaborative Sheffield Teaching Hospitals joint working PPIE group and maintain a presence at the National NIHR BRC and CRF PPIE Leads network meeting.

Academic PPIE Leads will also be appointed to BRC theme operational groups, reporting directly to theme leads on progress against PPIE objectives from within the themes.

PPIE will be a standing item on both operational and executive meeting agendas to monitor and review progress against strategic objectives and refine the strategy going forward.

The PPIE Officer will be primarily responsible for collating information relating to PPIE. They will liaise with and help to co-ordinate some patient panels and will lead on outreach activities and research conversations in the community, keeping an impact log to see where initiatives are making a difference.

The BRC Academic PPIE Leads and CRF Operations Manager will also contribute towards writing impact cases and the annual report. The Patient Executive group will help to decide on cases to publish and how these are shared more widely.

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