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Integrating the patient voice into plain language summaries


KEY TAKEAWAYS

  • Plain language summaries of journal publications and congress presentations are an effective way to communicate research to a broader audience
  • A new, practical ‘how-to’ guide explains how patients can and should be involved at each stage of their development

Patient Focused Medicines Development (PFMD) is a not-for-profit collaborative initiative that aims to improve global health by ensuring patient voice is built into all aspects of future healthcare. To facilitate the creation and adoption of an effective patient-centred framework, PFMD has published a series of connected ‘how-to’ guides that set out practical guidance for patient engagement in key phases of drug development, from research to medicine delivery. The latest guide provides recommendations on how to involve patients in the development of plain language summaries (PLS).

PLS of peer-reviewed publications and congress presentations allow researchers to present their work to a wider audience, including patients, caregivers, and the general public, by using accessible, jargon-free language to describe the study and its findings. Patient involvement in the development of PLS has typically been restricted to reviewing summaries once they have been written. The PFMD guide strongly encourages patient input at every stage of the process, including selecting which publications are most suitable to develop summaries for, planning the content of PLS, and writing them.

The PFMD guide strongly encourages patient input at every stage of PLS development, including selecting which publications are most suitable to develop summaries for, planning the content of PLS, and writing them.

The authors propose that PLS of journal publications should be co-created with key stakeholders from the target audience, using the following stepwise approach:

  1. Consider the rationale and scope of your PLS
  2. Identify your target audience
  3. Consider dissemination channels for your PLS
  4. Identify your key stakeholders for co-creation of the PLS
  5. Write your PLS
  6. Disseminate your PLS
  7. Track dissemination and measure success

The guide presents considerations for quality public engagement for each of the steps detailed above and discusses the ethical principles that should underpin PLS development. Additional guidance specific for PLS of conference presentations is also provided.

The authors hope that the use of their ‘how-to’ guides will increase the level of meaningful engagement with patients and, ultimately, improve research outcomes.

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What do you think – will the PFMD guide lead to greater patient involvement in the early stages of PLS development?

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