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The last 6 months, I have been part of a research project that looked at the links between diabetes and kidney disease. We created an online survey for people who had both conditions, and after the survey, we selected a small number of people to interview so they could elaborate on their answers.
The project was a collaboration between a large pharma-company based in Denmark and the Danish Kidney Association. Having two different perspectives meant we were able to cover many aspects of living with diabetes and CKD. It soon became clear that the medical industry is not used to such research, so they hired an anthropologist to help with the set-up. I would do the interviews and we would analyze them together.
After our careful analysis and discussions with other patient advocates the material revealed three conclusions:
- Quality of life is more important than physical wellbeing
- Chronic illness complications are a package
- Ownership of care is essential