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Participatory design in education materials in a health care context

Blog post by Svante Lifvergren on behalf of Frida Smith, Catarina Wallengren, and Joakim Öhlén

A growing set of evidence shows that person-centred care not only empowers patients – it also increases patients’ self-management abilities and improves medical outcomes. At the core of person-centred care in general and a person-centred communication in particular stands the ability to acknowledge patients as the persons they really are, including their context, their history, their family, their strengths and weaknesses etc. Listening to and confirming patients’ narratives and experiences is therefor pivotal.

However, equally important is a continuous communication with the patient throughout the care process regarding various care activities and procedures. Written patient information such as patient education material is one important tool for this communication. Hitherto, most written patient education material has been created by care professionals, not taking into account the patients’ opinions and perspectives in the design process.

This paper is probably rather unique in giving a detailed and in-depth description of a participatory design process of developing patient education material for patients with colorectal cancer. Patients, clinicians, researchers and designers were all involved as co-designers in the process. Principles from action research and person-centred care were combined to address tensions of power during the knowledge creating process. We get to know how various issues during the multi-stakeholder process were successfully dealt with and what lessons were learned. I agree with the authors that the results of this study can benefit both patients and other relevant stakeholders in the healthcare system in developing written patient education materials.

Written patient education material, for example, discharge-information is commonly used in hospital settings. Despite following guidelines on how to best present text and using patients as consultants, improvements can still be made from a patient’s perspective.

Abstract

Here, we describe the process of developing patient education material using a participatory design methodology, with patients, clinicians, researchers and designers working as co-designers following a structured process map. The method emphasizes coping with conflicting interests and using this as a source of development. The philosophies behind action research and person-centred care were combined in a practical setting, enhancing both perspectives and generating actionable knowledge to be further used in patient involvement projects. The results reveal that predominant areas of tensions focused on power, organization, content and clinical usability. This study is one of the first to involve patients as co-designers of education materials in the health care context, and not only as consultants. Working as co-designers was found to be productive and in line with person-centred care philosophy, with focus on partnership and equality. The results of this study can therefore benefit both patients and other relevant stakeholders in the healthcare system in developing written patient education materials.

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