September 30 2014 Latest news:
Annabelle Dickson, Political Editor
Thursday, February 27, 2014
Giving patients greater access to their medical records could help find if “another Harold Shipman” is working in Britain, a former Government adviser said today.
Conservative George Freeman insisted making people opt in to a huge new database, known as care.data, rather than opt out, would also “hugely undermine” efforts to spot another GP similar to the serial killer, or needless hospital deaths.
Mr Freeman added some areas of the health service are “in a dark age” while the younger generation in particular have growing expectation that they can use their data to increase accountability.
Concerns over care.data must be addressed to ensure public trust is earned - rather than taken for granted - in order to allow the benefits of the project to emerge, the Norfolk MP told a debate.
The database was due to be rolled out by NHS England in April but has been delayed until later this year. Critics warned patients had been kept in the dark about how their data will be used outside the NHS.
Date of birth, postcode, NHS number and gender are to be included in the new care.data record, which is said to be anonymised, if patients do not opt out.
And Mr Freeman, co-founder of the Patients4Data campaign, suggested a new charter of patient rights is needed to define how people could access their records quickly rather than Whitehall officials.
He also called for tougher punishments than fines for data breaches, a written clause in GP and clinician contracts to ensure data is collected properly and for data release advisory bodies to be given proper oversight and governance arrangements.
Speaking during a Westminster Hall debate, Mr Freeman said medical data had been shared for 25 years but the Government’s latest plans could ensure better targeted medicines are developed.
The Mid Norfolk MP, who had a 15-year career in biomedical science and research, claimed the changes would ensure data is used better to allow more patients to be pro-active in preventing disease, being directed to helpful information and to ask questions about their care.
Mr Freeman, who stood down as the Government’s life sciences adviser to concentrate on constituency matters last year, told the debate: “Our constituents want to understand and to see that their patient journey through the health and care system is properly tracked.”
He questioned why he could not log on with the NHS number of his elderly mother, for whom he has power of attorney, to examine her care and live information on her condition when she was not getting the care she needed.
Mr Freeman continued: “It’s a small example but I think it’s one the younger generation particularly expect now in the delivery of public services. They want and expect data and easy online access to drive accountability.
“I think the genie is out of the bottle, in terms of public interest in the power of data and online access to drive both transparency of outcomes and patient empowerment.
“The frightening truth is that we are currently in a dark age in terms of this in some areas of our health service.”
Mr Freeman said he welcomed care.data but the issue was about ensuring it could be done with public trust and confidence.
He went on: “With all the technological advances over the last century, we are still unable to say how many people receive chemotherapy in the NHS each year or how many prescriptions.
“For all we know, there could be another Harold Shipman, God forbid, operating in a GP practice somewhere in Britain. Or, more likely, a GP surgery or social care unit operating well below acceptable standards that we would deem acceptable.
“You, we, the patients, taxpayers and citizens of this country have a right to know and a right to expect we are asking the right questions and using our position in Government and our privileged access to that vast data set to make sure we are asking the questions and demanding the answers.
“The horror stories from Mid Staffs were only brought to light by the power of outcomes data. Patients were dying unnecessarily, people drinking water from flower vases.
“Whistleblowers, we now know, were ignored. It was only the power of data that the scandal was uncovered. Data, after all, doesn’t lie.
“If sunlight is, as (Health Secretary Jeremy Hunt) has rightly said, the best disinfectant then open data provides the light we need to stop the sort of abuses that were going on in places like Mid Staffs and Winterbourne View.”