Background
Evidence syntheses are a type of research that combine multiple studies on the same topic to answer a question of interest. They are used to help clinicians, policy-makers and researchers to make evidence-informed decisions.
 

Many types of evidence syntheses exist.¹ One of the most commonly conducted types of evidence synthesis is a systematic review, which can be used to identify whether an intervention is effective for addressing a condition or a problem (e.g. dexamethasone treatment for COVID-19), or whether a diagnostic test is accurate to identify individuals with a condition of interest, for example.² Another type of evidence synthesis that is becoming more popular is the scoping review, which aims to identify how many and what types of studies (e.g. trials, surveys) have been conducted on a topic of interest, and to answer what knowledge gaps still remain.³
 

We were interested to learn what is – and what is not – currently known about involving consumers in the co-design of nutrition interventions. These interventions included, for example, specific diets (e.g. a Mediterranean diet) or complex interventions consisting of a diet combined with other elements, such as exercise, supportive text messages, educational videos, online platforms, and so on. We conducted a scoping review to identify and combine the existing studies that reported on consumer co-design of nutrition interventions.⁴
 

The public as partners
Meaningful involvement of community, consumers, patients and other stakeholders in research and decision-making is increasingly being promoted and adapted, including in the field of evidence synthesis. This is because this type of involvement has been found to increase transparency, trust in the decision-making processes, and the relevance to stakeholders of the outcomes evaluated in the course of conducting the research.^5,6
 

In light of these considerations, and in light of the focus of our scoping review on consumer co-design, specifically, we invited a consumer expert (AC) to be part of our scoping review team, which also consisted of researchers with expertise in nutrition and dietetics (NM, AY, AR, SW, SdJ), and evidence synthesis methodologists (AMS, PZ).
 

Going further together
We had not specified the role of the consumer expert in the review. Initial discussions with AC centred around assisting with interpretation of the literature from a consumer perspective; however, we preferred to be flexible in order to allow the contributions to emerge naturally, based on the team’s comfort level, time constraints, and interest. In the end, AC contributed significantly more than the original intentions due to her keen interest in the topic area and high level of critical thought. In summary, these contributions included:

• definition of co-design used throughout the project: reviewing the existing definitions of co-design that were used in the literature, identifying the key elements of co-design that were crucial (e.g. power sharing, partnerships between the lived and professional experience), and developing the final definition used in the review based on previously conducted consultations with over 120 consumers, healthcare professionals and researchers;
• study protocol: proposing changes to the original inclusion criteria based on lived experience and reviewing the protocol draft prior to it being finalised;
• searching for the relevant literature: suggesting additional terms for the search strategy based on previously led consultation about co-design to increase the comprehensiveness of the literature search;
• screening of the literature identified in the searches: providing advice on whether to include or exclude articles that were borderline or uncertain for inclusion in or exclusion from the review;
• data extraction design: leading the development of the ‘ideal co-design checklist’ (which was based on lived and professional experience), together with two other review authors (NM, AY);
• data extraction: completing the extraction of one-half of the articles that met the review’s inclusion criteria, extracting data on whether it reported the elements of the ‘ideal co-design checklist’;
• manuscript writing and review: contributing to the writing of the discussion section of the manuscript and reviewing the finalised manuscript prior to its submission to a journal.

Benefits and challenges
This extensive consumer involvement considerably enriched and strengthened both the review’s content, as well as applying a co-design mindset to the process of conducting the review.
 

For the review’s content, our consumer expert’s insights and lived experience ensured that the definition of co-design that we used was true to the key principles of co-design; increased the comprehensiveness of the search for the relevant literature; resolved uncertainties about including some of the identified studies; led to the development of a new ‘ideal co-design checklist’, which was subsequently used in the data extraction; and accelerated the completion of data extraction and writing.
 

Equally importantly for the review process, the insights broadened the clinical and academic perspectives to also encompass the perspective of lived experience, enabling mutual learning about co-design from a range of perspectives as well as increasing confidence in the accuracy of the findings of our review.
 

The process also included challenges. First, we adopted an accelerated timeline for the completion of the scoping review, using a modified 2weekSR methodology. This methodology relies on the use of automation tools, agile methodology, and (mostly) protected time to vastly accelerate the completion of a review within approximately two weeks. (The scoping review was completed in 18 calendar days.) However, this compressed timeline somewhat limited the ability to build additional knowledge and capacity. We mitigated this with daily meetings to discuss the challenges and issues as they arose, upskill, and demonstrate skills and tools as needed; however, with additional time, the benefits may have been further maximised.
 

Second, due to COVID-19, geography and other professional commitments, the involvement was entirely via online platforms. This somewhat limited the opportunities for informal discussion about studies during screening or data extraction. While online engagement provided inclusive participation benefits, completing those tasks in the same room as other researchers could potentially increase both confidence of competency and accuracy, and shared learning.
 

Key messages

• Our review project exemplified a very extensive level of involvement and partnership between a consumer expert, researchers with expertise in nutrition and dietetics, and methodologists.
• While recommendation of consumer inclusions do exist,⁷ there are currently no clear rules about how consumers and the community should be involved in evidence syntheses – and a wide range of types and levels of involvement have been reported in the literature.⁵
• An appropriate type and level of involvement needs to be discussed and agreed to by all project partners on each project individually, and will depend on the needs, capacity and timelines of the project.
• It is beneficial to share examples of these types of Partnerships for Purpose so that both researchers and consumers can learn from the best practices of others.
• Reporting guidelines on consumer involvement that capture the role of consumers in research exist.⁸
• Use of the International Association for Public Participation (IAP2) spectrum to describe the level of involvement⁹ may also provide a helpful, standardised terminology to assist in future evidence syntheses involving consumers. 

References

1. Grimshaw J. A guide to knowledge synthesis: a knowledge synthesis chapter. Canadian Institutes of Health Research; 2010 [cited YYYY MMM DD]. Available from: https://cihr-irsc.gc.ca/e/41382.html.
2. Higgins JPT, Green S, editors. Cochrane handbook for systematic reviews of interventions. Wiley-Blackwell; 2011.
3. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143.
4. Meloncelli N, Young A, Christoffersen A, Rushton A, Zhelnov P, Wilkinson S, et al. Co-designing nutrition interventions with consumers: a scoping review. Open Science Framework; 2022 [cited YYYY MMM DD]. Preprint available from: https://osf.io/tq34h/
5. Boden C, Edmonds AM, Porter T, Bath B, Dunn K, Gerrard A, et al. Patient partners' perspectives of meaningful engagement in synthesis reviews: A patient-oriented rapid review. Health Expect. 2021;24(4):1056-71.
6. Wale J, Scott AM, Hofmann B, Garner S, Low E, Sansom L. Why patients should be involved in health technology assessment. Int J Technol Assess Health Care. 2017;33(1):1-4.
7. Pollock A, Campbell P, Struthers C, Synnot A, Nunn J, Hill S, et al. Development of the ACTIVE frameworks to describe stakeholder involvement in systematic reviews. J Health Serv Res Policy. 2019;24(4):245-55.
8. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;2(358):j3453.
9. IAP2 (International Association for Public Participation). IAP2 spectrum of public participation. IAP2; 2-18 [cited 2022 Aug 1]. Available from: https://iap2.org.au/wp-content/uploads/2020/01/2018_IAP2_Spectrum.pdf.

Authors
Anna Mae Scott¹, Nina Meloncelli^2,3, Adrienne Young^4,5, Anja Christoffersen⁶, Alita Rushton^3,7, Pavel Zhelnov⁸, Shelley Wilkinson⁷, Susan de Jersey^2,4.
 

1 Institute for Evidence-Based Healthcare, Bond University, Robina, QLD, Australia
2 Perinatal Research Centre, Centre for Clinical Research, University of Queensland, Brisbane, QLD, Australia
3 Metro North Allied Health, Metro North Hospital and Health Service, Brisbane, QLD, Australia
4 Dietetics and Foodservices, Royal Brisbane and Women’s Hospital, Metro North Health, Brisbane, QLD, Australia
5 Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia
6 Champion Health Agency, Brisbane, QLD, Australia
7 School of Human Movement and Nutrition Sciences, The University of Queensland, St Lucia, QLD, Australia
8 Independent Researcher, Mtskheta, Georgia

Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.