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

Our plain-English summary of Using creative co-design to develop a decision support tool for people with malignant pleural effusion, by C. Grindell, A. Tod, R. Bec, et al (BMC Medical Informatics and Decision Making, 2020).

The study

• Authors: C. Grindell, A. Tod, R. Bec, D. Wolstenholme, R. Bhatnagar, P. Sivakumar, A. Morley, J. Holme, J. Lyons, M. Ahmed, S. Jackson, D. Wallace, F. Noorzad, M. Kamalanathan, L. Ahmed, M. Evison
• Journal: BMC Medical Informatics and Decision Making
• Published: 2020;20(1):179
• Cited by: 13 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

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.

In plain English

In this UK service improvement project, not a study of asbestos exposure, the authors used creative co-design to develop a decision support tool for people with malignant pleural effusion, a build-up of fluid around the lung seen mainly in metastatic lung and breast cancer and in malignant pleural mesothelioma. Pleural teams at hospitals in London, Manchester and Bristol each ran a local workshop with clinicians, five patients and two to four carers. A national workshop in London followed, which included two patients. The workshops found that patients cared more about managing the effusion's symptoms than their overall cancer treatment, and that visual information was of key importance. Personal circumstances, such as how active people were and what support they had at home, influenced treatment decisions. The research team made and revised a video prototype of a website; a software company then developed a web-based version ready for testing. The authors concluded that the process overcame some of the common barriers to co-production, namely power, language and time. They noted that the tool had not been evaluated and that patient input diminished after the first workshops.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Service improvement project using distributed creative co-design (co-production) workshops and prototype development; not a clinical study or evaluation
• Who was studied: Clinicians, patients with malignant pleural effusion, and carers from three UK pleural teams (St Thomas' Hospital, London; Wythenshawe Hospital, Manchester; Southmead Hospital, Bristol). Local workshops: Site 1 had 5 patients and 2 carers, Site 2 had 5 patients and 3 carers, Site 3 had 5 patients and 4 carers, plus clinical staff. National workshop: 2 facilitators, 2 consultants, 3 registrars, 3 nurses and 2 patients. The article does not give the dates of the workshops.
• Exposure: No asbestos or other exposure was studied. The article mentions malignant pleural mesothelioma only as one of the conditions in which malignant pleural effusion occurs.
• Main results:
  • In the local workshops, patients were more concerned about managing the symptoms of malignant pleural effusion as an immediate priority than about their overall cancer treatment
  • In the local workshops, people wanted information in several formats, but visual information was of key importance for understanding and decision making
  • The national workshop found that the main influences on treatment decisions included personal aspects of people's lives, such as how active they are and what support is available at home
  • The national workshop gave a clear message that there is no 'one size fits all' solution for managing malignant pleural effusion
  • The TK2A research team developed the first prototype as a video representation of an online decision support aid
  • The first video prototype received positive feedback, but there were concerns it could be read as prioritising one treatment over another
  • The TK2A team made a second prototype that added a traffic light system. The content and video were then passed to a software company, which developed a web-based version of the tool ready for testing
• The authors' conclusion: The authors concluded that the creative and distributed co-production process overcame some of the common barriers to co-production in healthcare, namely power, language and time
• Limitations the authors state:
  • The tool has not been evaluated in a clinical setting, so its effectiveness is uncertain
  • Few patients had input across the project because of their ill health; their input diminished after the first local workshops
  • The findings and the prototype were not intended to be generalisable beyond the local context
  • Creative co-production is resource intensive

Topics

The National Library of Medicine indexes this study under subjects our site covers: Lung cancer, Mesothelioma.

Medical terms in this study, explained in our Lexicon: Pleural Effusion, Pleural Mesothelioma.

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