How can patients and the public help to improve research?

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The formerly closed world of medicine is increasingly opening its doors to admit fresh ideas and former ‘outsiders’, and paternalism is steadily diminishing.

As a result, patients and the public are contributing more and more to the conduct of healthcare research – both what is researched and how studies are undertaken. [1] Worldwide, there is growing support for collaborating with patients as partners in the research process, and useful guidance is now available for professionals who wish to involve patients and the public. [2,3,4]

Patients’ choice: David and Goliath

‘Who has the power to see that research questions actually address the greatest needs of patients in all their misery and diversity?’

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Patients have experience that can enhance deliberations and provide insights. Their first-hand knowledge can shed valuable light on the way in which people react to illness and how this affects choice of treatments. Accumulating evidence from questionnaire surveys; [5] systematic reviews of research reports;  [1] reports of individual trials; [6] and impact assessments [7] shows that involvement of patients and the public can contribute to improving tests of treatments.

Among many initiatives, the Cochrane Collaboration, an international network of people who review, systematically, the best available evidence about treatments, has embraced the input of patients from its inception in 1993.

The James Lind Alliance, established in 2004, brings together patients, carers, and clinicians to identify and prioritize those unanswered questions about the effects of treatments that they agree are most important.

‘People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public’

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This information about treatment uncertainties helps to ensure that those who fund healthcare research know what matters most to patients and clinicians.[8] Beginning in 2008, the European Commission funded a project to promote the role of patient organizations in clinical trials with the aim of pooling experience among European countries through workshops, reports, and other exchanges. [9]

In other countries, too, there is active public representation in research activities generally. Roles are continually evolving [10] in various ways, enabling patients and the public to work together with health professionals, and new methods of doing so are being developed. [11]

This is happening across the whole spectrum of research activities:

  • formulation of questions to be addressed
  • design of projects, including selecting which outcomes are important
  • project management
  • development of patient information leaflets
  • analysis and interpretation of results, and
  • dissemination and implementation of findings to inform treatment choices.
  • Ichalmers

    Replace ‘reviews of research reports;1’ by ‘reviews of research reports;[1]’

    Chapter 13, point 2

    • Douglas_Badenoch

      Done