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Doing interviews together

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carers, education and training, research

Over the past twenty years, more and more research had been produced in partnership with patients and carers. People who know about illness and disability through living with it day-to-day are teaming up with academic researchers and working on a research project together. When this is done well, the result is better because it blends the academic skills of experts by training with the gritty reality that is brought by experts by experience. It delivers a more accurate account of real life and more really useful recommendations for change. The people who fund health research call it ‘patient and public involvement’ and insist on it.

Doing patient and public involvement properly means that patients and carers get involved with every stage of the research, from choosing what to study, to bidding for funds, doing the project and getting the findings into practice. Some bits are easier than others.

One bit is collecting research data by conducting interviews. In the past, academic researchers decided on the questions, checked with the Ethics Committee, found some people willing to be interviewed and got started.

Over the past 20 years, pioneers have started to do their interviews differently. Sometimes they team up with a volunteer patient or carer and carry out the interview together, perhaps asking alternate questions. This volunteer patient or carer is a ‘peer interviewer’ as they share some life experience with the person that they are interviewing. Other pioneers have invited the peer interviewer to work alone and ask all the questions themselves. People sometimes open up and give much more honest answers to someone who really knows ‘what they are on about’.

In recent weeks, I have come across several research teams that want to work in this way, but have been prevented from doing so. What is going wrong? I’d love to know what you think the problem is, and what can be done to fix it. In the meantime, here’s a few questions.

  • What level of ability and skill is required to become a peer interviewer? People with learning disabilities have become peer interviewers, so could people with dementia do the same?
  • The research world shuts people out until they are properly trained and qualified to do the job properly. For example, researchers are expected to attend a course called ‘Good Clinical Practice’. Are these gates keeping experts by experience out? How much training should peer interviewers have?
  • Hospitals won’t allow anyone near their patients unless they are a relative or friend, staff member or authorised volunteer, or researcher with a ‘hospital passport’ that shows their project has been approved. Do these mechanisms that are designed to keep patients safe shut out peer interviewers?

There are lots of others issues too, like how people are recruited, supported and supervised, whether they should be paid and how confidentiality can be maintained. Can we pool our experience and find or write a guide to make it easier for others to move ahead on this?  

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