Using creative co-design to develop a decision support tool for people with malignant pleural effusion

Grindell, Cheryl; Tod, Angela; Bec, Remi; Wolstenholme, Daniel; Bhatnagar, Rahul; Sivakumar, Parthipan; Morley, Anna; Holme, Jayne; Lyons, Judith; Ahmed, Maryam; Jackson, Susan; Wallace, Deirdre; Noorzad, Farinaz; Kamalanathan, M; Ahmed, Liju; Evison, Mathew

doi:10.1186/s12911-020-01200-3

Cited by 10 publications

(49 citation statements)

References 20 publications

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“…12 13 The concept of patient-centered CDS, however, is new, and even less is known about specific strategies tailored toward codesign of CDS. 14 There are several themes among the strategies described. One is the preference toward iterative or sustained engagement.…”

Section: Discussionmentioning

confidence: 99%

Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support

Leeuwen¹,

Mittelman²,

Fabian

et al. 2022

Appl Clin Inform

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Background Partnerships among patients, families, caregivers, and clinicians are critical to helping patients lead their best lives given their specific genetics, conditions, circumstances, and the environments in which they live, work, and play. These partnerships extend to the development of health information technology, including clinical decision support (CDS). Design of these technologies, however, often occurs without a profound understanding of the true needs, wants, and concerns of patients and family members. Patient perspective is important not only for patient-facing applications but for provider-facing applications, especially those intended to support shared decision-making. Objectives Our objective is to describe models for effectively engaging patients and caregivers during CDS development and implementation and to inspire CDS developers to partner with patients and caregivers to improve the potential impact of CDS. Methods This article serves as a case study of how two patient activists successfully implemented models for engaging patients and caregivers in a federal program designed to increase the uptake of research evidence into clinical practice through CDS. Models included virtual focus groups, social media, agile software development, and attention to privacy and cybersecurity. Results Impact on the federal program has been substantial and has resulted in improved CDS training materials, new prototype CDS applications, prioritization of new functionality and features, and increased engagement of patient and caregiver communities in ongoing projects. Among these opportunities is a group of developers and patient activists dedicated and committed to exploring strategic and operational opportunities to codesign CDS applications. Conclusion Codesign and implementation of CDS can occur as a partnership among developers, implementers, patients, cybersecurity and privacy activists, and caregivers. Several approaches are viable, and an iterative process is most promising. Additional work is needed to investigate scalability of the approaches explored by this case study and to identify measures of meaningful inclusion of patients/caregivers in CDS projects.

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Section: Discussionmentioning

confidence: 99%

Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support

Leeuwen¹,

Mittelman²,

Fabian

et al. 2022

Appl Clin Inform

View full text Add to dashboard Cite

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“…This is one of the first papers to provide a detailed description of a systematic approach to coproducing a decision aid, grounded in theory, evidence and lived experience. There is increasing recognition of the importance of high‐quality reporting of coproduction methods and the development process of decision aids 45–47 . Few decision aids developed in dementia care report their development clearly 16 .…”

Section: Discussionmentioning

confidence: 99%

“…In the methods, we have highlighted our approach to ensuring that they were adequately supported to participate. Previous work has developed alternative methods to increase the inclusivity and engagement of people in coproduction, 46 but considering this in the context of living with dementia is important. There are increasing numbers of articles reporting on the inclusion of people with dementia in research; however, they lack detail on coproduction methods 54 .…”

Section: Discussionmentioning

confidence: 99%

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

Davies

Sampson

West

et al. 2021

Health Expectations

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Background Family carers of people living with dementia often need support with making decisions about care. Many find end‐of‐life care decisions particularly difficult. The aim of this article is to present an evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision‐Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well‐being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end‐of‐life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.

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“…The creative co-design approach specifically tackles the described challenges of effective stakeholder engagement to improve the educational resources available to people with back pain in Sheffield, in line with the NICE guidance. Creative co-design is a participatory approach where interventions and services are developed 'with' not 'for' those who will use them (Sanders and Stappers, 2008) It uses creative and visual activities drawn from design to facilitate the sharing and synthesis of evidence, such as research and guidelines along with stakeholders' thoughts and ideas, into practical and tangible outputs that are more likely to be usable in practice (Grindell et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

The creative co-design of low back pain education resources

Webber

Partridge

Grindell

2022

Evidence &Amp; Policy

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Background: Evidence-based guidelines provide clinicians with best practice recommendations but not the means to implement them. Although co-design is increasingly promoted as a way to improve implementation there is frequently insufficient detail provided to understand its contribution. The presented case study addresses this by providing a detailed account of how a specific co-design approach contributed to an improving back pain education project in line with national guidance.Aim: The aim was to use creative co-design to produce prototype evidence-based back pain educational resources that were sensitive to context. Objectives: <ul><li>Assemble a group of relevant stakeholders for a series of workshops.</li><li>Use creative activities that encourage divergent and convergent thinking to iteratively understand the problem and develop prototype solutions.</li><li>Thematically analyse outputs of each workshop to determine content of subsequent workshops.</li><li>Present a final prototype ready for implementation.</li></ul>Key conclusions: <ul><li>This approach produced an innovative system of thematically linked back pain educational resources that were contextually sensitive, evidence-based and ready for implementation.</li><li>Research knowledge was successfully blended with stakeholder experiential knowledge.</li><li>The creative methods helped diverse stakeholders develop trusting relationships and ensured everyone’s experiences and ideas were included.</li><li>The process of co-creation and the objects created had vital roles in surfacing and understanding stakeholder knowledge, promoting innovation and facilitating implementation.</li><li>The design process facilitated an evolving understanding of a complex problem alongside prototype development.</li><li>It is recommended that these methods be considered by other project teams.</li></ul> Key messages <ul><li>To bring about meaningful change, evidence-based guidelines need to be implemented in ways that are sensitive to context and the complexity of healthcare.</li> <li>Co-production has the potential to produce better solutions but has its own challenges.</li> <li>Creative co-design can be an effective approach for overcoming these challenges.</li> </ul>

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Using creative co-design to develop a decision support tool for people with malignant pleural effusion

Cited by 10 publications

References 20 publications

Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support

Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

The creative co-design of low back pain education resources

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