“But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper researcher?” I think that those who know me will agree that I am not often lost for words. However, when the question above was posed to me, I can definitely…… Continue reading “But Sara…”
Month: July 2019
Some key aspects of patient-centered research
It is a truth universally acknowledged that many patients no longer settle for contributing to medical research only as participants in research studies. Over the last decade or so, patients have increasingly made their voices heard in all nooks and crannies of the research process. Some of my favourite examples include: Tom Isaacs, who was…… Continue reading Some key aspects of patient-centered research
PatientsLikeMe och kampen om patienters hälsodata
Amerikanska PatientsLikeMe (PLM) är, enligt dem själva, världens största personliga hälsonätverk/ webbsajt. På deras sajt finns över 650 000 medlemmar som själva rapporterar in hälsodata om mer än 2 900 olika sjukdomar och/eller tillstånd. Sajten, liksom företaget med samma namn, föddes när Stephen Heywood, en amerikansk självlärd arkitekt, år 1998 vid 29 års ålder fick…… Continue reading PatientsLikeMe och kampen om patienters hälsodata
Ziek. De Podcast
I was a guest in two episodes of the Dutch podcast Ziek, hosted by Tamar Doorduin. I’m very glad that I was allowed to speak English and didn’t have to learn Dutch. Episode 6 – Sara Riggare: developing Parkinson’s as a teen (ENGLISH) Link to website. In this two-episode series we follow Swedish patient advocate Sara…… Continue reading Ziek. De Podcast