A care or a cure: What do the people want?

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I have just recently been to a fascinating talk by a visiting professor of linguistics from Cardiff (Professor Alison Wray) who spoke about her research around formulaic language in Alzheimer’s disease. One of the points she made is that there is a possibility that we could diagnose the risk of getting dementia in later life from a simple language sample when people are in their early 20s. Wow! Yet she also emphasised that many individuals would not wish to know this information. How many people would want to know that they were going to get Alzheimer’s disease in 30 years time when as yet we simply do not have any sign of a cure. Would you have children? Would you get a mortgage, health or holiday insurance? Possibly not.

Putting yourselves in others shoes is an important skill for an empathic clinician. Similarly this is an important aspect of research. Researchers should consider the value of their work to the participants themselves. Is the desired outcome of this research useful for people living with the condition? I have met many people with dementia who long for a cure. Equally many understand that this research is perhaps more relevant to their grandchildren and yet to be born great grandchildren. What they also speak about is research to support what helps them live with the condition. In speech and language therapy this seems to be about therapy that can help them live well with their families and continue to function in their current lives.

Clinical research can have a direct impact on the lives of people living with the condition. Asking people what research should focus on can assist in guiding and justifying your choices. And this really is not as complicated as it seems. As a clinician you have an enormous resource at your finger tips; your patients and their families. There is no reason you can’t ask your patients what they think!

This type of consultation is an entirely appropriate way of seeking input for small (quality assurance work, pre-development work) or large-scale research proposals (fully funded trials). It makes your work stronger and more relevant (and more likely to get funding). And it is not as complicated as you think. You could:

  • Use your clinical knowledge and experience of what people ask for or talk about in therapy.
  • Collect feedback (verbal or written) from groups or individual therapy sessions.
  • You can write a brief survey or questionnaire.
  • You can even contact previous patients by phone to ask them.
  • You can  go to support groups or charities to consult with people more broadly.

Be creative but ask. Don’t assume that as a clinician or researcher we know what is best for the people we work with. Population health research is important but so is person centered health research. Providing evidence based day-to-day care is as and perhaps at the moment more important. The NHS has limited funds and we need to spend it wisely.

 

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