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Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach

Author

Listed:
  • Juliane Rackerseder

    (Institute of Medical Sociology, Health Services Research, and Rehabilitation Science (IMVR), Faculty of Human Sciences and Faculty of Medicine, University of Cologne, Eupener Str. 129, 50933 Cologne, Germany
    These authors contributed equally to this work.)

  • Carolin Hornbach

    (Institute of Medical Sociology, Health Services Research, and Rehabilitation Science (IMVR), Faculty of Human Sciences and Faculty of Medicine, University of Cologne, Eupener Str. 129, 50933 Cologne, Germany
    These authors contributed equally to this work.)

  • Peter Dicks

    (Vocational School University Hospital Aix-la-Chapelle, Pauwelstr. 30, 52074 Aix-la-Chapelle, Germany
    District Association of Larynx Operated Aachen e.V., Lörschpülgen 24, 52134 Herzogenrath, Germany)

  • Hedy Kerek-Bodden

    (House of the Cancer Patient Support Associations of Germany (HKSH-BV), Thomas-Mann-Str. 40, 53111 Bonn, Germany)

  • Theresia Krieger

    (Institute of Medical Sociology, Health Services Research, and Rehabilitation Science (IMVR), Faculty of Human Sciences and Faculty of Medicine, University of Cologne, Eupener Str. 129, 50933 Cologne, Germany)

Abstract

High-quality and user-friendly patient information material (PIM) is essential for understanding and accepting a new care programme. When optimising the PIM of the integrated, cross-sectoral psycho-oncological (isPO) care programme, the design of the fifth element of the patient information strategy—the patient-friendly website—was still pending. In this paper, the iterative design process of the patient-friendly isPO website is described. We applied the participatory health research (PHR) approach to enable high levels of participation of its respective end-users (e.g., cancer survivors), service providers, and experts. The design included six steps: (1) initiation, (2) planning, (3) initial idea exploration, (4) creation of a first working version, (5) three optimisation loops, and (6) dissemination. An exploratory mixed-methods design has been used. Qualitative data collection included document analysis, interviews, and participatory action research (PAR) loops with focus groups. Finally, the quality of the newly designed website was quantitatively assessed with the UPIM-Check, a user-friendly instrument for assessing and optimising PIM. The PHR approach was indispensable for the design of our needs-oriented, patient-friendly website. Participants’ high levels of participation strongly contributed to the products’ quality. The final descriptive statistical evaluation shows that the final website was rated very good on average by its end-users.

Suggested Citation

  • Juliane Rackerseder & Carolin Hornbach & Peter Dicks & Hedy Kerek-Bodden & Theresia Krieger, 2022. "Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach," IJERPH, MDPI, vol. 19(4), pages 1-16, February.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:4:p:1969-:d:745947
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    References listed on IDEAS

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    1. Theresia Krieger & Sandra Salm & Antje Dresen & Anna Arning & Kathrin Schwickerath & Andrea Göttel & Stefanie Houwaart & Holger Pfaff & Natalia Cecon, 2022. "Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany," IJERPH, MDPI, vol. 19(3), pages 1-17, January.
    2. Sandra Salm & Judith Mollenhauer & Carolin Hornbach & Natalia Cecon & Antje Dresen & Stefanie Houwaart & Anna Arning & Andrea Göttel & Kathrin Schwickerath & Holger Pfaff & Nadine Scholten & Theresia , 2021. "Participatory Development and Preliminary Psychometric Properties of the User-Friendly Patient Information Material Checklist (UPIM-Check)," IJERPH, MDPI, vol. 18(16), pages 1-16, August.
    3. Yan Zhang & Yalin Sun & Bo Xie, 2015. "Quality of health information for consumers on the web: A systematic review of indicators, criteria, tools, and evaluation results," Journal of the Association for Information Science & Technology, Association for Information Science & Technology, vol. 66(10), pages 2071-2084, October.
    4. Pretty, Jules N., 1995. "Participatory learning for sustainable agriculture," World Development, Elsevier, vol. 23(8), pages 1247-1263, August.
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