Involvement in data initiatives

Summer 2021. #NhsDataGrab is trending on Twitter and over a million people opt out of NHS data-sharing in one month backlash against government plan: General Practice Data for Planning Research. The scheme proposes that GP anonymised health data everyone England will be made available to researchers companies healthcare research planning. plan now hold, much the dismay scientists who believe saves lives.
 It has been suggested greater public participation around sharing help alleviate concerns, may prevent more members opting out. Health initiatives have involved different ways, from “citizen juries” panels advisory boards.
 Using ethnographically-informed qualitative case studies, this project takes closer look at involvement approaches initiatives. studies include: citizen juries asked jurors consider real-world initiatives; panel set up by regional databank carries linking; an board national institution. I carried observations activities, conducted semi-structured 1:1 interviews with those organise taken part activities.
 recently completed collection, analysis ongoing. thematic primarily inductive, using principles grounded theory drawing Silverman’s constant comparative method. Key themes, patterns, variations are currently being noted developed. Current areas interest epistemic or democratic reasoning activities; roles actors play how contributors changed their involvement.