Recommendations to improve use and dissemination of patient versions of oncological clinical practice guidelines in Germany: results of a multi-stakeholder workshop

TL;DR

This paper presents recommendations to improve the use and sharing of patient-friendly cancer treatment guidelines in Germany, based on a workshop with various stakeholders.

Contribution

The novel contribution is a set of 28 consensus-based recommendations for improving patient guideline dissemination and use in Germany.

Findings

28 out of 35 recommendations reached consensus among stakeholders.

Recommendations cover topics like dissemination, design, digital links, and collaboration between patients and providers.

The workshop included diverse participants from 24 organizations.

Abstract

Oncological patients have high information needs that are often unmet. Patient versions of oncological clinical practice guidelines (PVG) translate clinical practice guidelines into laypersons’ language and might help to address patients’ information needs. Currently, 30 oncological PVG have been published in Germany and more are being developed. Following a large multi-phase project on oncological PVGs in Germany, recommendations to improve use and dissemination of PVG were adopted in a multi-stakeholder workshop.

Organisations representing users of PVGs (patients, medical personnel, and multipliers), creators, initiators/funding organisations of PVGs, and organisations with methodological expertise in the development of clinical practice guidelines or in patient health information were invited to participate. The workshop included a World Café for discussion of pre-selected recommendations and structured consensus procedure for of all recommendations. Recommendations with agreement of > 75% were approved, and in case of ≤ 75% agreement, recommendations were rejected.

The workshop took place on 24th April 2023 in Cologne, Germany. Overall, 23 people from 24 organisations participated in the discussion. Of 35 suggested recommendations 28 recommendations reached consensus and were approved. The recommendations referred to the topics dissemination (N = 13), design and format (N = 7), (digital) links (N = 5), digitalisation (N = 4), up-to-dateness (N = 3), and use of the PVG in collaboration between healthcare providers and patients (N = 3).

The practical recommendations consider various perspectives and can help to improve use and dissemination of oncological PVG in Germany. The inclusion of different stakeholders could facilitate the transfer of the results into practice.

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