Healthy Weight Public Engagement

Our overarching aim is to frame the voices of the public and people with lived experience of issues relating to weight (including healthy eating, being active and stigma) at the heart of our research by integrating patient and public involvement (PPI) throughout everything we do. We will incorporate the public voice throughout the governance structures (including Oversight and Advisory Board meetings) of the Policy Research Unit in Healthy Weight (HWPRU). We will adhere to our key principles of PPI and Equality Diversity and Inclusion (EDI) guidelines in all activities, which we have co-developed with our PPI contributors (see below, under headline Key Principles).

We will aim to conduct meaningful PPI at all stages of our research, by working with children, young people and adults with relevant lived experience. These public members will provide valuable input in conceiving and planning work, co-designing methods and public-facing materials for the studies, interpreting study findings and producing creative outputs as part of a broad dissemination strategy.

• We will engage with policy makers and relevant stakeholders about the role of PPI in our research. We will highlight the added value of engagement activities, the impacts on our research, and ensure the voice of people with lived experience of different body sizes are represented and help inform the thinking of policymakers.

• We will engage with the public via creative dissemination to feed into public narratives and decrease the stigma experienced by those living with an unhealthy weight. We will ensure outputs have been shaped in collaboration with PPI contributors and are meaningful and accessible to a lay audience.

• We will engage with PPI contributors throughout the course of research projects, principally to ensure they are clear about how their input was used and improved the research, but also to explain how the findings will be used and the possible policy changes or impacts that may follow.

The public members we work with will help us ensure the wording of our dissemination materials is appropriate and widely understood.

Structure

PPI will be 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 our PPI work.

Ken Clare and Leah Ndegwa are passionate about supporting people to achieve a healthy weight, reducing inequalities, and tackling discrimination. They both have experience of contributing to research and are open about their varied experiences, which include: living with excess weight; experiencing racial stigma; raising children under challenging economic circumstances; and using healthcare services.

Russell will undertake academic and administrative processes while Ken Clare and Leah Ndegwa will liaise with panel members to organise PPI activities. Russell will be responsible for the welfare of our PPI co-leads, training of researchers and will be jointly responsible with Ken Clare and Leah Ndegwa for the well-being and upskilling of panel members. This core team will meet three times a year and have a focus on fostering two-way relationships between academics and public contributor co-leads and providing feedback from research. The Executive group will be invited to these meetings, with at least one representative attending each meeting. This will demonstrate the importance of PPI among our leadership group to our co-leads. PPI will also be a standing item on the agenda of Executive group monthly meetings.

Russell will work closely with researchers and policymakers to ensure that, wherever possible, PPI is embedded in our work and to ensure capacity for PPI is built into project timelines. While there are some challenges in building PPI input into rapid response projects, we have sought to overcome these with a range of activity options, such as a rapid PPI input mechanism. 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 for undertaking all our PPI activities:

• 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.
• We will use non-stigmatising images in any outputs related to weight, eating and physical activity in line with the UK Association for the Study of Obesity guidelines.
• To incorporate EDI principles in everything we do by striving 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 lived experiences of people with issues relating to unhealthy weight and the mechanisms by which it develops (e.g., food insecurity, poverty or disadvantage) within our work. We aim to move beyond weight change, and highlight the wellbeing of people living with excess weight as an important outcome.

In addition, we have developed EDI principles, in consultation with investigators, researchers and PPI co-leads. This guidance is important given our work with diverse groups, and working closely with public contributors with lived experience of weight 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 regardless of their personal attributes.
• 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.
• To arrange at least one inclusive social event per year with HWPRU investigators and PPI co-leads.

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 primaily 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. Additional PPI resources will be available to also 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
• PPI networks from complementary research projects involving or led by HWPRU co-investigators

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)
• Us Network

We recognise the benefit of working with non-public stakeholders and, where appropriate, will engage with a range of stakeholders, using their expertise and experience to develop our research and maximise the impact of our work. These may include but are not limited to:

• Local Authority stakeholders
• Health professionals
• Industry representatives e.g., retail sector   

PPI panels and activities 

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 throughout our activities.

We will create bespoke panels for each substantive project, defined as core or responsive projects longer than 6-months that will result in an academic or policy briefing paper. We will approach members who have relevant lived experience of the topic and the particular activity that they will contribute to. Panels may involve face-to-face meetings (we are mindful of digital exclusion/literacy) and/or be hosted online.

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 accompany researchers when collecting data e.g., conducting interviews, asking questions from a lived experience perspective.
• Help to interpret research findings and help develop recommendations from a lived experience perspective.

We will provide feedback to public contributors and groups with lived experience, communicating how their feedback changed or improved the research and what the findings were. Public contributors will continue to receive feedback about the work they contributed to as we feel it is important to maintain relationships through continued communication.

Dissemination

We acknowledge the need to create change in the public narrative in this area of healthy weight and food policy. We acknowledge that owing to potential political sensitivities, public communication of findings may not be possible for all projects, but where we create public facing outputs, we will ensure that they are inclusive and accessible for diverse audiences.

We aim to co-create our public dissemination materials across projects and utilise creative channels to maximise our public reach. We will invite our public contributors to participate or offer testimonies in policy briefings and events. Examples of co-produced creative outputs may include:

• Short lay summary reports
• Infographics
• Blogposts
• Animations
• Social media feeds
• Films e.g., ‘talking head videos’ i.e., investigators/contributors speaking directly to camera

We will also consider producing a series of podcasts across the five-years and two public engagement events. These activities will provide opportunities to explain how we undertake our research and how it has, or will, 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 living with an unhealthy weight and the mechanisms that may lead to it. We will challenge conventional definitions of success (e.g. weight loss) as we believe the experiences and wellbeing of people living with obesity are important outcomes in their own right.

Payment and recognition

We will show recognition of the value contributions of people with lived experience provide to our work through financial renumeration. We will renumerate public contributors in line with NIHR guidance, currently £25 per hour. Payment will be made within two weeks of the activity in the form of bank transfer or vouchers (e.g., Amazon). Where panels are face-to-face, we will pay for travel and accommodation if necessary and reimburse any expenses incurred and/or provide refreshments during meetings.

Trusted relationships

PPI liaison (Russell) will organise regular check-ins with PPI co-leads to ensure their welfare and burden of work is manageable and to monitor progress against milestones for projects. Researchers will be supported to take responsibility for public contributors’ mental, physical and emotional well-being. PPI co-leads will engage with panel members to assess the burden of work and develop trusting relationships within and across projects.

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 to upskill public contributors and panel members in research activities. Training will be offered in various formats on a range of topics (e.g., presentation skills, public confidence, contributor training, research approaches including specific data collection, analysis methods, and facilitation skills). We will also offer access to peer support opportunities. Training and support will also be available for researchers less experienced in conducting PPI activities (i.e. facilitating PPI sessions, managing sensitivities, communicating in plain English and sign-posting processes).

Evaluation of PPI activities

PPI liaison (Russell) and co-leads (Clare/Ndegwa) will be in regular communication to ensure our PPI 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 discussions with public contributors after engagement sessions and organise yearly focus groups to explore the value and impact of PPI activities undertaken. We will evaluate our PPI activities via established processes to ensure PPI activities meet required needs and adhere to our core PPI principles. We consider impacts to be broader than research and policy outcomes but for public members themselves to benefit. For example, by learning new skills or building new networks. We will ensure public contributor well-being through our evaluation activities for each project. 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.

The NIHR Policy Research Unit in Healthy Weight is part of the NIHR and hosted by UCL