“The best teaching is taught by the patient himself”
Sir William Osler
Regius Professor of Medicine, University of Oxford (1905-1920)
Member organisations of DIPEx International meet strict quality standards criteria. Core elements of our approach to funding, team composition, training and assessment of research quality are:
1. Funding – the source of financing of any research for a DIPEx International website must be based on an ethical funding policy. Websites should not carry any commercial advertising.
2. Composition of the DIPEx International team in each country – each project group must include:
- a senior qualitative social scientist with a national reputation, a strong publication record in qualitative research and success in attracting major research funding
- a clinical lead with a national reputation and good networks in different specialties (academic GPs are likely to be successful team members)
- voluntary sector and user group input
We also recommend finding a health information specialist, health writer (editor) and links to a good website design team during the early stages of the first project.
3. Researchers who wish to join DIPEx International must attend an accredited course in DIPEx methods, to learn about project management and research methods. These courses are run by senior researchers in a range of member countries. A researchers’ handbook is provided, which takes the researcher step by step through the process of data collection and analysis, writing material and selecting data extracts for the websites.
The research training is designed for people who are already experienced qualitative researchers and focuses on the specifics of conducting research to be DIPEx compatible.
A shorter training course is offered by the UK DIPEx group for the project leads and managers who may not themselves be conducting research but need to be aware of project funding, ethics and project management issues including timelines and appointing/supporting research staff.
4. How else do we ensure the research is of sufficiently high quality? There are several ways that this can be indicated, even if language barriers mean that other members of DIPEx International are not able to review the material and outputs directly. For example:
- The research is funded through a competitive, peer-reviewed research stream.
- Each website includes AT LEAST 30 interviews, 20 topic summaries and 250 extracts from the interviews.
- Articles based on the research are published in peer reviewed social science and clinical journals.
- The website has been evaluated and demonstrates that the material covers the issues that are important to the patient group.
- The data has been shared with experienced researchers for secondary analysis (and if so has ideally led to peer reviewed publications).
- There are independent assessments of the quality of the processes involved, or examples of the impact of the research and websites.
- The websites are endorsed by voluntary organisations that represent patient experiences.