I owe a lot to research. Thanks to an immense number of dedicated researchers, I have access to reasonably effective treatments for my Parkinson with (so far) manageable side effects. And of course we need more research, in all diseases and on all levels of health and healthcare.
But, is the current process for how research is being undertaken ideal to achieve the best results? I think improvements are urgently needed and here’s why:
I don’t doubt for a second that researchers are dedicating all that time for all the right reasons: they want to help people and improve health and healthcare. But what does the system look like? Well, if you’re a researcher, or even just a doctoral student like me, you know very well that your work is rated to a large extent based on publications. And of course, that would be all good and well, assuming that scientific journals make sure that they assess that submitted articles address research important to patients. To my knowledge, to date, only the British Medical Journal actively asks researchers to what extent patient input has influenced the research reported in the submitted article (as described in this article about their strategy for patient partnership).
I was very happy to read about the Australian government’s proposed changes to the process of research funding earlier this year (link here), where they suggest more emphasis on “engagement” and “impact” over publications. As far as I know, the details of the proposed changes are not clear yet, but I am carefully optimistic.
Most research being done to date, is primarily done for the sake of research, secondarily for the sake of healthcare, and thirdly, if at all, for the sake of individual patients. This is a result of the very complex weave that makes up the current research process. And I am not saying that good or even great research cannot come from the current research process. I am however convinced that we would all benefit from a complementary research paradigm, taking the individual patient as its starting point.
Research being done for the sake of research may be good, but it’s not enough!
Under en helg i november 2015 var Stockholm platsen för ett nytt (för Sverige) och innovativt initiativ för träning för Parkinson. Narva boxningsklubb hade tillsammans med Parkinson Stockholm och mig bjudit in den portugisiska sjukgymnasten/fysioterapeuten Josefa Domingos för att erbjuda boxarna på Narva utbildning om Parkinsons sjukdom och dessutom prova-på träning för Parkinson Stockholms medlemmar. Det var en succé, som filmen nedan visar.
Nu letar vi efter sätt att kunna erbjuda regelbundna träningspass speciellt för personer med Parkinson, genom sponsring eller andra sätt. Om du har något förslag, kontakta mig via: firstname.lastname@example.org.