Methodology
Qualitative research has been developed within a number of traditions that vary in their philosophical assumptions and methodological focus. We used a combination of two approaches, both of which see research and the construction of knowledge as socially constructed processes. Grounded theory involves rigorously extracting and systemising the concepts, categories and themes from the evolving data. Validity, or trustworthiness, is checked by ensuring that the emergent theory be recognisable and relevant to those studied.14 Participatory research focuses on the inter-relationship between knowledge and power. It is based on a critical epistemology that sees research as an instrument for instigating social change and articulating the voices of marginal groups.15 We call our methodology consensual qualitative research: all aspects of our research — deciding the research topic and question, planning the design and methodology, gathering and analysing the data, were decided upon through mutual discussion and consensus in a series of meetings of a research team that comprised a mixed group of patients and professionals.
Initially, five patient and three professional researchers got to know one another through a set of conversations and developed a framework to negotiate and share ideas. We agreed to explore patients' own accounts of their ‘migraine journeys’ that were to be shared with other migraine sufferers rather than with professionals.
We held a further series of meetings that included mutual learning, role-plays and pilot interviews, to work out how best to conduct interviews that would enable participants to be open with what they told us. This suggested that patient researchers and participants preferred an informal conversational style interview, which led to the development of a broad topic guide. We allowed our research process to develop spontaneously. Further details of this process is beyond the scope of this paper but will be published elsewhere.
Recruitment of patient researchers
We wrote to patients who had attended a local intermediate care headache clinic, advertised through local press and word of mouth, and through an organisation for patients with migraine. Sufferers were invited to an open meeting to develop a headache research agenda. A number of meetings resulted in a core group of five patients who were keen to pursue a research project. They were joined by three professionals: a clinical psychologist with an interest in qualitative and consumer-led research; a GP who led a local headache clinic; and a research manager who administered the research unit of the general practice where the project was undertaken.