“The NHS has not yet won the public’s trust in an area that is vital for the future of patient care” — Secretary of State Jeremy Hunt quoted in paragraph 1.5
From the report:
“4.2.1 This has been a report about trust. It is hard for people to trust what they do not understand, and the Review found that people do not generally understand how their information is used by health and social care organisations.”
About the existing opt outs that patients have expressed:
“the Review recommends that, in due course, the opt-out should not apply to any flows of information into the HSCIC. ” (p31, 3.2.31 second column)
About the 25+ years of hospital data that continues to be sold:
“The Review recognises that the new opt-out should not cover HSCIC’s already mandated data collections, such as Hospital Episode Statistics (HES) data. The Review believes it is important that there is consistency and therefore where there is a mandatory legal requirement for data in place, opt-outs would not apply.” (p34, 3.2.41, bottom right)
We entirely agree with the Association of Medical Research Charities when they say:
“People need to feel that they can trust the system to handle their information with care and competence, and respect their wishes. If the public do not trust the system, they will be unwilling to share health information for medical research and this will seriously hinder progress on new treatments and cures of diseases such as cancer, dementia, rare conditions and many more.” http://www.amrc.org.uk/news/amrc-statement-on-the-caldicott-review
Phil Booth, coordinator of medConfidential said:
“Patient trust is vital. The NHS should win the publics trust by being seen to follow each patient’s wishes. However, yet again, the existing commercial entities demand leadership from others so they can continue feeding on patient data, despite the wishes of patients.
“The last data release register from HSCIC contains continued release to commercial companies. One, Beacon Consulting, on their homepage, advertise “we help our pharmaceutical clients solve difficult commercial problems”. Their commerical access was renewed in the most recent HSCIC data release register.”
“It seems the Department of Health is trying to have it both ways – tell patients one thing and commercial entities the other. When the consultation comes out, the public can have their say and the Department of Health will have to finally decide.”
“There has to be a better way to find out how your data has been used than reading google’s press releases.”
Notes
The Hospital episode statistics now contain 1.5 billion patient hospital events, linked to each patient across a lifetime. According to the review, the 1.2 million patients who have opted out of their data being included in the hospital episode statistics, continue to have their data included in the hospital episode statistics – their choice has been ignored.