Professor Diana Rose, who is leading the CLAHRC South London's work about patient and public involvement, has been involved in creating a method for producing patient-generated PROMS(1) – questionnaires that are developed by patients and service users who have personal experience of the relevant condition.
Research has shown that a professional's view of what constitutes a 'good outcome', or what aspects of health or care should be measured, doesn't always tally with the opinion of the individual whose condition and life is being assessed(2).
Professor Rose is co-director of the Service User Research Enterprise at the Institute of Psychiatry, King's College London and she and her colleagues there have developed four patient-generated PROMs(3) for use in research. Their method uses focus groups, expert panels and then psychometric testing to ensure each measure's validity. The development of each patient-generated PROM is led by a researcher who has personal experience of that particular condition, or service, or treatment – as do members of the focus groups.
The CLAHRC South London PPI team will develop new patient-generated PROMs to support some of the research being carried out by other CLAHRC South London specialist teams.