The NHS is launching a consultation with the public on who will be able to access their health records outside of direct care.
Access to the data has been a controversial topic under the £12.7 billion National Programme for IT, which is creating digital patient care records on a central data ‘spine’, and setting up electronic prescriptions and online booking services.
The consultation covers 'secondary users, and does not cover access to summary care records by doctors treating patients, a controversial topic after an advisory group at University College London questioned the ethics of automatic opt-in plans for patients.
That crucial decision is being taken based on recommendations by the NHS Care Records Board, an external stakeholder group, following the UCL review. The NHS will announce a decision on Thursday, but it has already said it was assessing proposals for a “permission to access” model, where patients give doctors consent to access the system when they enter hospital.
Under the separate consultation for research use, beginning today and lasting 12 weeks, the public will have the opportunity “to input into the way the NHS uses their health information” for medical research, screening, and “preventative activities”, the NHS said.
The consultation, being run by Tribal Consulting, which recently recruited interim NHS CIO Matthew Swindells, will publish its findings in the new year. At roadshows the NHS will also explain how it is tackling confidentiality and ethics concerns.
Questions being asked include the rights patients should have over access to their health data, who should access patient data other than in direct care, what process should govern access, and who should manage access.
The NHS said it had “always used patient information for planning and research purposes”, but added that the NPfIT programme allowed faster collection of information as data would be held centrally.
Professor Sir Alex Markham, chair of the Research Capability Programme, which is focused on making the most of NHS data in research, said: "It is vitally important that patients and the public understand how their health information might be useful and feel confident that their confidentiality will be protected.”
The online consultation is available on this website.