PhD thesis “Personal science in Parkinson’s disease – a patient-led research study”

riggare.se/updates-on-phd-t...

[Bolt_Upright]

So... I went to that page and read this article. It bothers me that doctors are talking about setting up frameworks to "allow" patients to do their own research. It bothers me a lot.

Ethical Aspects of Personal Science for Persons with Parkinson's Disease: What Happens When Self-Tracking Goes from Selfcare to Publication? ncbi.nlm.nih.gov/labs/pmc/a...

"We conclude that current ethical requirements that are commonly applied to clinical group research, are not per se suitable for research conducted by PwPs using personal science and that there is a need for development of adapted ethical procedures. To allow patient-led research in the form of personal science in PD to evolve further, specific ethical frameworks and regulations for self-tracking for personal science should be developed. The potential risk for self-inflicted harm should be given specific attention. For a person wanting to engage in personal science projects, ethical aspects always have to be considered. In general, observational designs can be considered unproblematic. When personal science projects intended to be publicly disseminated use interventional design however, specific ethical challenges can arise, which may warrant independent ethical review. "

[Bolt_Upright]

I found this link on the page too. Much better

Patient researchers — the missing link?

nature.com/articles/s41591-...

"The positive contributions of patient researchers should be formally recognized, patients should be encouraged and supported to take the lead of research projects, and colleagues without lived experience should be educated to appreciate the contributions of their patient-researcher colleagues. There has been progress in that direction. For instance, the University of Oxford recently awarded the first two scholarships for patient-led research2. However, there is a long road ahead. I hope that the growing community of patient researchers can get the credit and support we need to continue developing."

[Sapeye2020 in reply to Bolt_Upright]

I wonder if there has been any adjustment in the medical fraternity's position over the scarce 2 + years since she wrote the article... I think not, The medical system is great for things like pandemics or patch a broken bone but get off the 'track'' , the specialist will usually dismiss it saying something like "I've never heard about / of that !"