Obesity Care in Canada PSP protocol

  • Published: 04 January 2024
  • Version: V1
  • 12 min read

Purpose of the PSP and Background

The purpose of this protocol is to clearly set out the aims, objectives, and commitments of the Obesity Care in Canada – Research Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The project protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group commits to reviewing the project protocol regularly and sending updates to the JLA.

The JLA is a non-profit making initiative, established in 2004. It brings patients, caregiver, and healthcare providers together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, caregivers, and clinicians. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.

This PSP focuses on supporting adults who live with obesity through obesity care in Canada (from here on out called ‘Obesity Care in Canada – Research Priority Setting Partnership’). There are no existing research priorities related to adult obesity care in Canada. Importantly, most of the research in the area of adult obesity care in Canada has not considered the values and preferences of adults living with obesity, people who support their care (e.g., caregivers, spouses, family, community), or their health and social providers. To drive research that is informed by the patient (as well as caregivers, health and social care providers), a PSP is recommended so that important and authentic partnerships can be forged, and uncertainties documented from the people who matter most. Dr. Mary Forhan, Professor and Chair of the Department of Occupational Science and Occupational Therapy at the University of Toronto and former Scientific Director of Obesity Canada, and Dr. Sarah Moore, Assistant Professor in the School of Health and Human Performance and Department of Paediatrics at Dalhousie University will co-lead the PSP process with support of a JLA adviser, the steering committee, the coordinators, and information specialists. This PSP is funded by the Canadian Institutes of Health Research (CIHR) Planning and Dissemination Grant and from Obesity Canada. The first Steering Group meeting took place on November 14, 2023. We have proposed that the final priority setting workshop takes place in April 2024, although we recognize that this timeline is subject to building partnerships, research ethics, and the time our steering committee needs to reflect on findings.

Aims, Objectives, and Scope of the PSP

The aim of the Obesity Care in Canada - Research Priority Setting Partnership is to identify the unanswered questions about obesity care from people with lived experience of obesity, people who support their care (e.g., caregivers, spouses, family, community), their health and social care providers, and other researchers and clinicians working in this area, and then prioritise these unanswered questions to note the most important for research to address.

The objectives of the Obesity Care in Canada - Research Priority Setting are to:

  • Work with people with lived experience of obesity, who have experience accessing obesity care services, as well as people who support their care (e.g., caregivers, spouses, family, community), and their health and social care providers to identify uncertainties about obesity care in Canada.
  • Work together with these important partners to gather, refine, and prioritise uncertainties.
  • Agree by consensus and create a finalized list of those uncertainties as research priorities.
  • Critically evaluate the process and outcomes to ensure voices of underrepresented people are brought forward the throughout the process.
  • Critically examine the process and final list of research priorities to ensure consideration of equity, diversity, inclusion, and accessibility, and wherever possible, reduce bias, stigma, and discrimination.
  • Work together to publicise the results of the PSP and process, ensure any products use person-first, strength-based language as it relates to obesity, and uses visuals to represent diverse persons living with obesity in positive ways.
  • Take the results to research commissioning bodies to be considered for funding.

The scope of the Obesity Care in Canada - Research Priority Setting is defined as:

  • Obesity care is defined as services informed by evidence for the treatment and management of obesity, which is now understood to be a chronic disease. The goal of obesity care is to provide interventions that are effective in treatment and management of obesity, and the secondary prevention of obesity related complications.
  • This PSP will not prioritise any one service type of obesity care over another. Rather, we will focus on the domains of obesity care outlined in the Canadian Adult Obesity Clinical Practice Guideline. The domains include, but are not limited to, underlying and complex social determinants of health, treatment and management strategies such as pharmacological and surgical interventions, supportive behavioural interventions (e.g., physical activity, nutrition, technology, psychology, multi-component), and other factors that affect treatment and management of obesity, such as weight bias and stigma. We also recognize the diverse ways that people responding to this work may identify or define ‘Obesity Care’, that there are systemic and systematic barriers to accessing care for many people, and that care may be defined broadly or differently based on a person’s experiences, culture, and/or background. We welcome the perspectives of all person’s regardless of their definitions of ‘Obesity Care’.
  • Finally, while this PSP defines obesity as a chronic disease which is characterized by excessive adipose tissues that impairs health, we recognize that those that respond to this PSP may have varying views on the chronicity of obesity, its definition, or treatment/management, at every stage of this PSP, we welcome all perspectives regardless of an individual’s position on definitions and terms.

The PSP will exclude from its scope questions about:

  • Disorders secondary to obesity.
  • Paediatric obesity care in Canada.
  • Primordial prevention and primary prevention of obesity

The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.

The Steering Group

The Steering Group includes membership of people with lived experience of obesity, people who support their care (e.g., caregivers, spouses, family, community), their health and social care providers, and other researchers and clinicians working in this area . The Obesity Care in Canada - Research Priority Setting Partnership will be led and managed by a Steering Group. Current membership (November 14, 2023) includes:

James Lind Alliance Adviser and Chair of the Steering Group:

  • Tamara Rader, James Lind Alliance

Leads:

  • Mary Forhan (Ontario), Professor and Chair of the Department of Occupational Science and Occupational Therapy, University of Toronto
  • Sarah Moore (Nova Scotia), Assistant Professor, School of Health and Human Performance, Department of Pediatrics, Dalhousie University

Project Coordinators:

  • Amanda Higgins (Nova Scotia), Master of Health Promotion Candidate, Dalhousie University
  • Emily Burke (Nova Scotia), Master of Health Promotion Candidate, Dalhousie University

Information Specialist:

  • TBD

People with Lived Experience of Obesity, People who Support their Care (e.g., Caregivers, Spouses, Family, Community), their Health and Social Care Providers, and Other Researchers and Clinicians:

  • Lisa Singh (Alberta, Lived Experience Partner)
  • Tara Clelland (Alberta, Lived Experience Partner)
  • Elizabeth Cochrane (Ontario, Lived Experience Partner)
  • Ian Patton (Ontario, Director of Patient Engagement)
  • Jordanna Kapeluto (British Columbia, Endocrinologist)
  • Adalberto Loyola-Sanchez (Alberta Physiatrist)
  • Sarah Oosman (Saskatchewan, Physiotherapist and Associate Professor)
  • Harman Chaudhry (Ontario, Orthopaedic Surgeon)
  • Jennifer Brown (Ontario, Registered Dietitian)
  • Dayna Lee-Baggley (Nova Scotia, Psychologist)
  • Kristine Godziuk (Alberta, Post Doctoral Fellow)
  • Annalijn Conklin (British Columbia, Associate Professor)
  • Others, TBC

The Steering Group will support this project with their time and expertise to support each stage of the process, with input and advice from the JLA.

Partners

Organisations and individuals will be invited to be involved with the PSP as partners. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP.

Partners represent the following groups:

  • People who have lived experience of obesity and experience accessing obesity care in Canada.
  • People who support those with lived experience in their care (e.g., caregivers, spouses, family, community).
  • People who are health and social care providers of obesity care in Canada.
  • Other obesity advocacy organizations in Canada, such as Obesity Canada, the Canadian Medical Association, and the Canadian Society for Endocrinology and Metabolism, amongst others.

Exclusion criteria

Some organisations may be criticised by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.

The Methods the PSP Will Use

This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website where examples of the work of other JLA PSPs can be seen.

Step 1: Identification and invitation of potential partners.

Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of The Obesity Care in Canada - Research Priority Setting Partnership.

Step 2: Awareness raising.

PSPs will need to raise awareness of their proposed activity among their patient, caregivers, and clinician communities, to secure support and participation. This will be done via social media, e.g., Facebook groups, Instagram, via posters in clinics, etc. The Steering Group should advise on when to do this.

Awareness raising has several key objectives:

  • To present the proposed plan for the PSP
  • To generate support for the process
  • To encourage participation in the process
  • To initiate discussion, answer questions and address concerns.

Step 3: Identifying evidence uncertainties.

The Obesity Care in Canada - Research Priority Setting Partnership will carry out a consultation to gather uncertainties from patients, caregivers, and healthcare providers. A period of 12-18 months will be given to complete this exercise (which may be revised by the Steering Group if required).

The Obesity Care in Canada - Research Priority Setting Partnership recognises that we may require creative methods for reaching our target population.

The Steering Group will use the following methods to reach the target groups:

  • Social media (e.g., Facebook, Twitter/X, Instagram, LinkedIn, etc.)
  • Clinic poster boards, electronic monitors
  • Clinic newsletters, listservs
  • Supporting obesity-related organizations social media, newsletters, listservs
  • Paper-based surveys and electronic surveys
  • Face-to-face workshops

Existing sources of evidence uncertainties may also be searched. Literature searches on various databases will be conducted to identify already identified evidence uncertainties, true uncertainties, and the current trends in adult obesity care in Canada and globally.

Step 4: Refining questions and uncertainties.

The consultation process will produce ‘raw’ questions and comments indicating areas of uncertainty. The PSP acknowledges that not all respondents will submit responses in question format; these responses will be included in the refining process. These raw questions will be categorised and refined by Amanda Higgins and Emily Burke into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.

This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested and may then be developed into research questions at the end of the priority setting exercise.

The summary questions will then be checked against the existing evidence to determine whether they have already been answered by research. This will be coordinated by the Project Leads with support of the Steering Group. The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form will be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.

Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by Amanda Higgins and Emily Burke. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data will be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, to ensure that PSP results are publicly available.

The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.

Step 5: Prioritisation – interim and final stages.

The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about adult obesity care in Canada. This will involve input from patients, caregivers, and healthcare providers. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation.

  1. Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree on the method and consider how best to reach and engage patients, caregivers, and healthcare providers in the process. The most highly ranked questions (around 25) will be taken to a final priority setting workshop. In the event, the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.

  2. The final priority setting stage is generally two * half-day workshops through an online meeting platform (e.g., Zoom) and/or in-person meeting, facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 patients, caregivers, and healthcare providers will be recruited to participate in a day of discussion and ranking, to determine the “Top 10” questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.

Dissemination of Results

The Steering Group will identify diverse audiences with which it wants to engage when disseminating the results of the priority setting process. The Steering Group will determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.

It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by the Project Leads but guided by the team.

The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to the JLA.

Agreement of the Steering Group

This project protocol was agreed upon by the Steering Group on November 30, 2023.