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, Meera, AHMED, Liju and EVISON, Mathew (2020). Using creative co-design to develop a decision support tool for people with malignant pleural effusion. BMC Medical Informatics and Decision Making, 20 (1), p. 179.

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Abstract: Background: Malignant pleural effusion (MPE) is a common, serious problem predominantly seen in metastatic lung and breast cancer and malignant pleural mesothelioma. Recurrence of malignant pleural effusion is common, and symptoms significantly impair people’s daily lives. Numerous treatment options exist, yet choosing the most suitable depends on many factors and making decisions can be challenging in pressured, time-sensitive clinical environments. Clinicians identified a need to develop a decision support tool. This paper reports the process of co-producing an initial prototype tool. Methods: Creative co-design methods were used. Three pleural teams from three disparate clinical sites in the UK were involved. To overcome the geographical distance between sites and the ill-health of service users, novel distributed methods of creative co-design were used. Local workshops were designed and structured, including video clips of activities. These were run on each site with clinicians, patients and carers. A joint national workshop was then conducted with representatives from all stakeholder groups to consider the findings and outputs from local meetings. The design team worked with participants to develop outputs, including patient timelines and personas. These were used as the basis to develop and test prototype ideas. Results: Key messages from the workshops informed prototype development. These messages were as follows. Understanding and managing the pleural effusion was the priority for patients, not their overall cancer journey. Preferred methods for receiving information were varied but visual and graphic approaches were favoured. The main influences on people’s decisions about their MPE treatment were personal aspects of their lives, for example, how active they are, what support they have at home. The findings informed the development of a first prototype/service visualisation (a video representing a web-based support tool) to help people identify personal priorities and to guide shared treatment decisions. Conclusion: The creative design methods and distributed model used in this project overcame many of the barriers to traditional co-production methods such as power, language and time. They allowed specialist pleural teams and service users to work together to create a patient-facing decision support tool owned by those who will use it and ready for implementation and evaluation.

Item Type: Article
Additional Information: ** From Springer Nature via Jisc Publications Router ** Licence for this article: **Journal IDs: eissn 1472-6947 **Article IDs: publisher-id: s12911-020-01200-3; manuscript: 1200 **History: collection 12-2020; published_online 05-08-2020; online 05-08-2020; accepted 23-07-2020; registration 23-07-2020; submitted 17-05-2019
Uncontrolled Keywords: Research Article, Clinical decision-making, knowledge support systems, and theory, Creative co-design, Co-production, Malignant pleural effusion, Decision support tool, Complex intervention development
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Page Range: p. 179
SWORD Depositor: Colin Knott
Depositing User: Colin Knott
Date Deposited: 06 Aug 2020 10:07
Last Modified: 17 Mar 2021 23:48

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