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We are working with theÌýObesity InstituteÌýat Leeds Beckett University to make sure that the views of people with experience of living withÌýobesityÌýare represented in all stages of our work.

Structure

PPI will be conceived as a cross-cutting theme of the HWPRU, running through all projects and workstreams, ensuring that the public voice is central to priority setting. Our PPI co-leads (Ken Clare and Leah Ndegwa) will work with the Unit Manager and PPI Liaison Officer (Dr Simon Russell) to lead PPI work. Clare and Ndegwa are passionate about supporting people to achieve a healthy weight, reducing inequalities, and tackling discrimination. They have experience of contributing to research and are open about their experiences of living with excess weight, racial stigma, raising children under challenging economic circumstances, and interacting with healthcare services. Russell will undertake academic and administrative processes while Clare and Ndegwa will liaise with panel members to organise PPI activities. Russell will be responsible for the welfare of PPI co-leads, training of researchers and will be jointly responsible with Clare and Ndegwa for the well-being and upskilling of panel members. This core team will meet three time a year and have a focus on fostering two-way relationships between academics and public contributor co-leads and providing feedback from research.

Russell will work closely with researchers and policymakers to ensure PPI is embedded in work and to ensure capacity for PPI is built into project timelines. We acknowledge some challenges in achieving this; some research requests from DHSC have short deadlines, which presents difficulties when incorporating PPI. However, we believe that with planning and support, we can build capacity of researchers and work closely with DHSC so that meaningful PPI is incorporated into the vast majority of HWPRU projects.

Key Principles

Along with our PPI co-leads we have identified the following key principles that will be integral to PPI activity undertaken within the HWPRU:

• To use person-first and inclusive language.
• To ensure communication with contributors and the public uses language that is accessible for broad and diverse groups.
• To incorporate EDI principles in everything we do: To strive for fairness of opportunity, to recognise, respect and celebrate difference, and to create welcoming environments. EDI university networks will be extended to public contributors. These networks provide guiding principles to creating safe places for people with shared identities and backgrounds to connect and make positive changes together.
• To co-design and produce in a way that authenticates input from public members.
• To frame the experiences of people living with obesity or an unhealthy weight within our work, to move beyond weight change, and highlight the wellbeing of people living with excess weight as an important outcome.

We have developed EDI guidelines, in consultation with investigators, researchers and PPI co-leads. This guidance is important given our work with diverse groups, and contributors with lived experience of stigmatisation and discrimination.

• EDI to be included as a standing agenda item in HWPRU leadership meetings.
• Showcasing the achievements of everyone who contributes to research activity and outputs.
• Ensuring mechanisms for hearing dissenting or quiet voices.
• Ensuring representation and support for early and mid-career researchers. We will develop and maintain an ECR network and invite ECRs to attend leadership meetings.
• Transparency and consultation with staff on any decisions that will affect work life or conditions.
• Career development support where all staff have access to training funds for professional development.
• Ensuring fairness and transparency within each project team. Line managers and project leads will make time to discuss workload and work-life balance with staff members and contributors.
• Meetings and social events will be designed to be inclusive e.g., will not involve alcohol consumption.

We will incorporate reflection and self-awareness on our EDI commitments at our leadership and project meetings. We believe reflection on our practices and listening to public contributors will ensure our adoption of EDI principles is authentic.

PPI Partners

We will primarily work with Obesity Voices, the PPI hub of the Obesity Institute, hosted at Leeds Beckett University, representing people with differing realities of living with overweight across the socio-demographic spectrum. We retain some resource to work with other partners were required, including:

• National Childrens Bureau
  • Family Research Advisory Group
  • Young Research Advisors
• NIHR Applied Research Collaboration North Thames research advisor panel
• Third sector organisations, such as
  • Beat (the UK’s eating disorder charity)
  • Bite Back (a youth activist movement challenging food systems)
  • SHINE Health Academy
• Great Ormond Street Hospital Young Persons’ Advisory Group
• Great Ormond Street BRC Parent and Carers Research Group

We intend to include children and young people in our PPI activity. In addition to the National Children’s Bureau Young Research Advisor group, we will draw on other panels as required including:

• Association for Young People’s Health (AYPH)
• Royal College of Paediatrics and Child Health (RCPCH)

PPI activitiesÌý

We will integrate the public voice within project working groups, the Executive, and Advisory Board. Our PPI co-leads will have a key role in identifying meaningful opportunities for PPI within each project and applying our PPI principals through our activities. Activities will primarily consist of bespoke panels created for each project, which will be involved from conceptualisation through to dissemination.

Activities will include creating bespoke panels for each project, with members who have relevant lived experience. Panels may be face-to-face meetings (we are mindful of digital exclusion/literacy) but can alternatively be hosted online. Panels will:

• Rank the importance of research proposals and help prioritise workplans.
• Consider research approach and methods.
• Co-design patient facing materials.
• Join or chaperone researchers when collecting data e.g., conducting interviews, asking questions from a lived experience perspective.
• Interpret research findings and help develop recommendations from a lived experience perspective.

We plan to provide feedback mechanisms to public contributors and groups with lived experience, communicating about what the research was about, how we did it, what the findings were, and how will they be used. Public members will continue to receive feedback about the work they contributed to as we feel it is important to maintain relationships through continue communication.

Dissemination

We acknowledge the need to create change in the public narrative in this area of healthy weight and food policy. We suggest creating public facing outputs that are inclusive and accessible as a matter of course for our research projects. We acknowledge that owing to sensitivities, these outputs may not be possible for all projects.

We will include public contributions in our dissemination materials and utilise creative channels to disseminate to those living with obesity. We plan to include public contributions and testimonies at policy briefings and events, in addition to co-produce creative outputs including:

• Talking head videos
• Short infographics
• Social media feeds
• Short animations
• Short summary reports
• Blogposts

We also propose producing a series of up to 10 podcasts across the five-years and two public engagement events. These will be opportunities to explain how we undertake research and how it’s used to inform the development of policy. Collectively these activities will increase the accessibility of our research findings to the public, broaden the impact of our work and assist in changing the narrative around obesity, weight loss and how we define success. We believe the experiences and wellbeing of people living with obesity are important outcomes.

Payment and recognition

We will show recognition of the contributions of people with lived experience in the way we value and appreciate their involvement.

We will renumerate public contributors at a minimum rate of £25 per hour in line with NIHR guidance within 2 weeks of the activity.

We will usually provide vouchersÌý(amazon or Love2shop) but can provide cash payments in some circumstances.

Where panels are face-to-face, we will pay for travel and accommodation if necessary and reimburse any expenses incurred.

Trusted relationships

PPI liaison (Russell) will organise regular check-ins with PPI co-leads to ensure their welfare, burden of work and to monitor progress against milestones for activities and projects.

Researchers will be supported to take responsibility for public contributor mental, physical and emotional well-being. PPI co-leads will engage with panel members to assess burden of work and develop trusted relationships.

Training and upskilling

We see ourselves as a team working together to achieve a common goal and will create a training and support framework to ensure opportunities for upskilling of public contributors and panel members.

Training will be offered in various formats on a range of topics (e.g., presentation skills, public confidence, contributor training, and more specialist data collection, analysis, and facilitation), and offer access to peer support opportunities.

Training and support will also be made available to researchers who may be less experienced at conducting PPI activity, for example in facilitating sessions.

Researchers will be encouraged to contribute regular communications with panel members to provide the broader context of work they are involved in.

Evaluation of PPI activities

PPI liaison (Russell) and co-leads (Clare/Ndegwa) will be in regular communication to ensure activities are appropriate and effective. This core team will continually assess PPI suitability for each project, evaluating what worked well, what worked less well and what could be improved. We will use PPI impact logs to describe involvement, demonstrate impacts and identify implications for policy and public health. Impact logs can also be used to draw activities together and produce a HWPRU portfolio of public engagement.

Russell will organise interviews and discussion with participating members after engagement sessions and organise yearly focus groups to explore the value and impact of PPI undertaken. We will also participate in the robust system for PPI evaluation established by our PPI collaborator, Obesity Voices, to ensure PPI activities meet required needs and adhere to the core principles. We consider impacts to be broader than research and policy outcomes but for public members themselves, for example by monitoring burden of work on PPI co-leads and panel members. We will ensure public contributor well-being on a project-by-project basis. PPI liaison (Russell) will be the first contact point if there are any adverse outcomes. If there is a significant concern, the issue will be referred to the PI for that project who will follow due process of the relevant institution.

Advisory Board

The HWPRU Advisory Board acts to provide independent, external and policy-orientated advice to the Healthy Weight Policy Research Unit. The Advisory Board functions as a 'critical friend', providing specific advice and support in relation to the strategic direction and the work programme. The Advisory Board is an advisory-only body, it does not make decisions in its own right or report to any other group or committee.

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The NIHR Policy Research Unit in Healthy Weight is part of the NIHR and hosted by ¹û¶³Ó°Ôº