NHS England has admitted to a gathering of MPs that it has failed to explain the benefits of care.data to patients.
A health committee meeting convened yesterday to hear an oral evidence session on the proposed care.data database.
Tim Kelsey, national director for patients and information, NHS England, was a witness at the hearing and admitted that NHS England had not thoroughly explained the benefits of the potential database.
NHS England announced its plans to expand the collection of patient care data from hospitals to include general practices in January. The plans are to improve research on data on disease and treatment patterns.
An NHS England spokesman said last week the delay was to “allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out”.
Kelsey said NHS England will be “launching a sizeable programme of activity” to assure patients that strict and legal safeguards are in place, that data won’t be used for “any other purpose than those that benefit the health system”, to properly explain the benefits of the programme to potential users as well as how patients can opt-out of providing their data.
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“As far as NHS England is concerned, we’re taking it seriously,” he told the hearing. “Even with the existing provisions of safeguards are the tightest they’ve been, we’re still not satisfying people that [their data] won’t be sold on to another party.”
The MPs who were in attendance yesterday were angered at times during the discussion.
Kelsey said NHS England would return to the committee with proposals on how to achieve this six month plan.
“This is not a PR exercise or a stunt,” said Kelsey. “It’s about the future of the health service.”
When asked by the committee what would happen to the project if 90% of patients decided to opt out of allowing their data to be sent to the databae, Kelsey said: “That would not be a good position for us to be in.”
He also said that if 90% of patients decided to opt out he wouldn’t think there would be a health service for much longer, to which the committee accused him of scaremongering.
Days after the decision to delay the care.data database by six months, The Telegraph unveiled a story that the medical records of every NHS hospital patient was sold to insurers.
This was bought up by MPs during the hearing, to which the witnesses said the incident had occurred under “old laws” and could not be repeated.
The idea behind the care.data system is to send data from GP surgeries in England to the Health and Social Care Information Centre (HSCIC) as anonymous and pseudonymised data to be used for research purposes only.
Prior to the committee hearing from Kelsey, as well as Max Jones, director of information and data services, HSCIC and Dr Daniel Poulter MP, Parliamentary Under Secretary of State for Health, another hearing discussed the benefits and potential dangers of the care.data database.
Sharmila Nebhrajani, chief executive, Association of Medical Research Charities. said while the database would be a valuable asset, it has so far been executed “rather poorly".
“The public is rightly worried they don’t know who can and who can’t use their data,” she said.
Nebhrajani also demonstrated the importance of datasets such as care.date, saying similar datasets once provided the link between smoking and lung cancer.
The act of sending anonymised data to HSCIC has already been happening with data from hospitals for the past 20 years, but the idea of sending data from GP surgeries has not been widely accepted or understood by the public.
The committee heard that GPs are more likely to acquire much richer data than hospitals. GPs are likely to accrue personal information over time such as conditions, details about patient’s lives including mental health, domestic violence and much more than would necessarily be attained through an isolated hospital visit.
Jones told the committee that information from free text notes on patients would not be shared with the care.data database – only encoded data. He also said some explicit conditions data would not be extracted, including data on HIV/AIDs, termination of pregnancies, abuse, and imprisonment, however mental health issues would be collected via encoded data.
The main concern is that data will be sold on to external agencies that may be able to identify patients from pseudonymised data – where patient names are replaced with a pseudonym in order to be able to recognise patterns in multiple datasets.
The committee argued that governmental departments might also wish to access the database, for instance the Department for Work and Pensions (DWP) may find care.data help to contribute to its Fitness to Work programme.
Kelsey and Jones said the HSCIC and NHS England intend to be fully transparent of the data’s uses. They told the committee that all applicants and users would be audited, and data would only be shared if it would benefit the health service as per section 354 of the Health Act.
Jones said the HSCIC board has already asked for information about all applicants to be produced on a quarterly basis to aid in transparency.
Kelsey said the other concern of the programme was that GPs had not been given enough time or resources to inform their patients effectively.
He said there were very real concerns about GP’s ability to communicate the programme to patients on top of their already very heavy workload. He said GPs would be supported more in the future.