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Meaningful engagement and involvement of people living with multiple long-term conditions and communities in health care research: A scoping review Authors: Mansi Chopra, Mansi Gupta, Bhavya Sharma, Anna Lavis, Shabana Cassambai, Nikhil Srinivasapura Venkateshmurthy, Natalia Oli, Ambika Thapa, Justin Waring, Sailesh Mohan, Patrick Highton, Abhinav Vaidya, Kuldeep Singh, Kamlesh Khunti, Dorairaj Prabhakaran, Monika Arora Review questions 1. What are the most widely used theories, models, and frameworks to engage[i] and involve[ii] people living with MLTCs? 2. What is the effectiveness of methods to identify, involve, and prioritize communities[iii] in research/management/prevention of MLTCs? Searches Searches in Embase, Scopus, PubMed, and Google Scholar for studies published in English Language from any date will be undertaken. Case studies, reports, book chapters emerging from grey literature will also be searched. Searches will be re-run before data analysis is complete. Types of studies that will be included This scoping review will consider cross-sectional, case-control, and cohort studies along with trials (experimental and quasi), before-after, Difference-in-Difference, and interrupted time series analysis studies. All original articles (both qualitative and quantitative) using any community engagement and involvement framework in patients with MLTCs for research, engagement in treatment, and healthcare (patients diagnosed with two or more co-existing chronic conditions) will be included. This review will also consider descriptive observational study designs including case series, individual case reports, and descriptive cross-sectional studies for inclusion. Additionally, relevant case studies, book chapters, and reports from grey literature will be considered. Types of studies that will be excluded Studies from which it is not possible to extract relevant patient characteristics including the number and type of conditions will be excluded. All review articles, conference proceedings, editorial letters correspondence, abstracts, author debates, summary articles, and interviews will also be excluded. Non-English articles will be excluded. Participants/population All studies involving patients diagnosed with two or more co-existing chronic conditions (specific conditions in addition to chronic conditions listed in the paper cited below) and related stakeholders (family, community, health system, and community) at the global level will be included. Azcoaga-Lorenzo, A., Akbari, A., Davies, J., Khunti, K., Kadam, U.T., Lyons, R., McCowan, C., Mercer, S.W., Nirantharakumar, K., Staniszewska, S. and Guthrie, B., 2022. Measuring multimorbidity in research: Delphi consensus study. BMJ Medicine, 1(1), p.e000247. Main outcome(s) · Theories, models, and frameworks used for engagement and involvement of the community for MLTCs · Measures of effectiveness of CEI models and frameworks on the most vulnerable and hard-to-reach population · Methods to identify, engage and prioritize stakeholders in research/management/prevention of MLTCs Additional outcome(s) · Implementation of CEI models in LMIC/SEAR settings · Level of stakeholder involvement · Partnership and coalition · Autonomy of stakeholders · Environmental changes · Behavioural changes Data extraction (selection and coding) All returns identified from searches will be pooled and screened based on titles and abstracts, conducted by two reviewers. Full-text articles will be appraised by two reviewers to identify those meeting the inclusion criteria. Discrepancies between reviewers will be resolved through discussion with a third reviewer. Data items to be extracted will include author and year of publication, study setting including geographical or contextual details (like LMICs, HICs), study population, participant demographics, baseline characteristics, CEI models/frameworks/theories, constructs/concepts/dimensions of the models/frameworks/theories, methods of engagement/involvement, MLTCs covered, outcomes, and times of measurement. Review team members and their organisational affiliations 1. Dr Mansi Chopra, Health Related Information Dissemination Amongst Youth (HRIDAY), New Delhi, India 2. Dr Mansi Gupta, HRIDAY, New Delhi, India 3. Ms Bhavya Sharma, HRIDAY, New Delhi, India 4. Dr Anna Lavis, University of Birmingham, UK 5. Dr Shabana Cassambai, University of Leicester, UK 6. Dr Nikhil Srinivasapura Venkateshmurthy, Public Health Foundation of India, New Delhi, India 7. Dr Natalia Oli, Kathmandu Medical College, Kathmandu, Nepal 8. Dr Ambika Thapa, Kathmandu Medical College, Kathmandu, Nepal 9. Dr Justin Waring, University of Birmingham, UK 10. Prof Sailesh Mohan, Public Health Foundation of India, India 11. Dr Patrick Highton, University of Leicester, UK 12. Dr Abhinav Vaidya, Kathmandu Medical College, Nepal 13. Prof Kuldeep Singh, All India Institute of Medical Sciences, Jodhpur, India 14. Prof Kamlesh Khunti, University of Leicester, UK 15. Prof Dorairaj Prabhakaran, Public Health Foundation of India, India 16. Dr Monika Arora, HRIDAY, New Delhi, India [i] It is the way in which research can be shared with the public in a two-way process. Engagement encourages researchers to listen and interact with the general public. (NIHR Glossary https://www.nihr.ac.uk/glossary?letter=E&postcategory=-1) [ii] Process where people are actively involved in research projects and in research organizations. (A Researcher’s Guide to Patient and Public Involvement, University of Oxford https://oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf) [iii] For the purpose of this scoping review community will include people living with MLTCs, their caregivers, front line health workers, local leaders, health systems.

Additional file 1. CARE Checklist of information to include when writing a case report.