Participatory design in education materials in a health care context

Abstract

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.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 emphasises 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.

Prepared for surgery – Communication in nurses' preoperative consultations with patients undergoing surgery for colorectal cancer after a person‐centred intervention

“…Significant others were present in 61% of the consultations compared to 14% in the study before the intervention (Pettersson et al., ). This could be explained by the fact that, in the developed PEM, significant others were more directly invited to participate in the consultation (Smith et al., ). This contrasts with a study involving focus‐group discussions with spouses of patients being operated for rectal cancer, who described the difficulties of being involved in their partners' disease and treatments because they had not generally been invited to participate during patient information sessions.…”

“…An intervention was developed by the authors based on preparatory studies to explore and understand current patient information given to patients with CRC (Smith, Wallengren‐Gustavsson, & Öhlén, ; Smith et al., ), and according to the results of those studies, a new interactive patient education material (PEM) was developed, considering patient preferences, content, readability, suitability, comprehensibility and language use (Smith et al., ). The preparatory studies also explored structure and content of 50 preplanned consultations between professionals and patients during the colorectal cancer care from diagnosis, surgery and recovery (Carlsson et al., ) and more in detail described in the preoperative consultations between patient and nurse (Pettersson et al., ).…”

“…The intervention concept consisted of two interrelated components: (i) a written interactive PEM; and (ii) communication between patients and professionals in a dialogue format using the interactive PEM as a supporting tool. The interactive PEM was developed for Swedish patients with CRC undergoing elective surgery based on person‐centredness (Smith et al., , ). This study focuses on communication between patients and nurses in the preoperative consultations and if and how the person‐centred intervention shaped the preoperative communication.…”

Developing Infographics to Facilitate HIV-Related Patient–Provider Communication in a Limited-Resource Setting

“…Fourth, final infographics were paper-, rather than computer-, based, as this would be the format available for use at CFLR. Consistent with other participatory design methodologies, 35,[53][54][55] the resulting method, described in the "Development of Infographics through Iterative Participatory Design Sessions" section, enabled us to codesign infographics alongside three key stakeholder groups: (1) health care providers who offer HIV-related services at CFLR, (2) experts in informatics, visualization design, and participatory design, and (3) PLWH who receive services at CFLR.…”

Exploring the phase for highest impact on radicality: a cross-sectional study of patient involvement in quality improvement in Swedish healthcare

“…Despite these challenges, there are promising examples of patient involvement in QI, for example, in acute care, 18 development of patient education materials 17 and neonatal care. 19 The positive effects of patient involvement include enabling patients to act as intermediaries between other patients and clinicians, which may help to convince healthcare professionals of a need for change.…”