The issue is one of consent. Thete are many reasons why patients may need to keep their data private. Data colkection projects such as Care.data will always fail unless this is addressed properly. Make sure that every single person in the Country is aware of the collection, and exactly who will have access, and ensure an easy process of opting out. Only then will you start to build the essential trust.
There has been some significant progress on one of the points raised by Professor Buchan: keeping it local. Although underway for some years, cooperation locally here among healthcare organisations (Social Care & NHS), to collect and analyse anonymised patient and service user data was given a huge boost by the Covid pandemic which allowed the NHS CCG to produce an information dashboard giving immediate visibility to rates of infection, hospital admissions, hospital & ICU bed occupancy, fatalities etc. The net result has been to highlight to everyone, including patients, the NHS centrally & DoHSC, the value of data being shared and available to trusted local organisations.
This won't resolve the continuing, underlying issue of "trust" in national NHS organisations or indeed the chaotic DoHSC which appears to lurch from one crisis to the next depending on the latest political whim.
Trust is key and, as Prof Buchan states in the article, this involves careful communication. People have a right to understand what their data is used for and to be reassured that it is properly anonymised and handled. Of course people will say no if their impression is different
The issue is one of consent. Thete are many reasons why patients may need to keep their data private. Data colkection projects such as Care.data will always fail unless this is addressed properly. Make sure that every single person in the Country is aware of the collection, and exactly who will have access, and ensure an easy process of opting out. Only then will you start to build the essential trust.
There has been some significant progress on one of the points raised by Professor Buchan: keeping it local. Although underway for some years, cooperation locally here among healthcare organisations (Social Care & NHS), to collect and analyse anonymised patient and service user data was given a huge boost by the Covid pandemic which allowed the NHS CCG to produce an information dashboard giving immediate visibility to rates of infection, hospital admissions, hospital & ICU bed occupancy, fatalities etc. The net result has been to highlight to everyone, including patients, the NHS centrally & DoHSC, the value of data being shared and available to trusted local organisations.
This won't resolve the continuing, underlying issue of "trust" in national NHS organisations or indeed the chaotic DoHSC which appears to lurch from one crisis to the next depending on the latest political whim.
Trust is key and, as Prof Buchan states in the article, this involves careful communication. People have a right to understand what their data is used for and to be reassured that it is properly anonymised and handled. Of course people will say no if their impression is different