What is care.data about?

Monday evening (April 28th 2014), I attended a public meeting held at Lancaster Town Hall on government proposals to allow wider access to patients’ GP medical records – the scheme called “care.data”.

The meeting was organized by Richard Tutton, Mairi Levitt, Garrath Williams and Maggie Mort from Lancaster University and sought to create space for public debate on an important issue that has not received much attention. Speakers were invited to give their take on cara.data and engage in discussions with the audience.

The speakers included:

  • Garrath Williams from the Department of Politics, Philosophy and Religion at Lancaster University
  • Colin Brown from Morecambe Bay NHS Trust, Chief Clinical Information Officer
  • Phil Booth from medConfidential.org
  • Helen Speed, Information Systems Manager for the University Hospitals of Morecambe Bay NHS Foundation Trust
  • David Wrigley, NHS GP in Lancashire.

Briefly, care.data is the NHS program that is meant to use patient data held at the GP practices for purposes beyond direct health care. It is part of the bigger re-organization within the NHS with the ‘Health and Social Care Act 2012’ that came into force in April 2013. Sharing of patient data from a GP practice to an information centre is not new, but what’s new with the care.data program is the routine sharing of information from the patient’s medical record for “secondary use” that includes research, evaluation and planning of NHS services, but also allowing patient data to be sold to commercial/private companies. Read more on medConfidential.org and Dr. Neil Bhatia’s care.data website. See also Garrath Williams for an overview of the care.data program.The roll out of the program has been extended until September 2014.

It was a lively meeting with good discussions that mostly centred on people’s concerns about the care.data program. There were concerns about the opt-out model (you are automatically part of the program but if you want to opt out, you will need to fill out a form and hand over to your GP). But to opt out, you first of all need to know about the program, as Garrath pointed out.

You might have seen the leaflet that came through the door or you might have, like me, confused the leaflet with junk mail and never noticed the ‘pizza-take-away-like’ leaflet with information about the government’s suggestion for better care. Phil Booth believes there has been a lack of information about the program; not only have the general public been badly informed, but Phil said that he is also shocked by the lack of engagement with the GPs. Garrath made a similar point and calls for transparency and clear answers to the questions: What is care.data for and who is it for?

During the meeting, there was also confusion about what kinds of data are actually being shared (what does it look like?) and the location of the data. Confusing seems to be the best way to describe the care.data program at the moment.

Coming back to Garrath’s question of the purpose of care.data. Colin Brown and Helen Speed both spoke about the importance of having information at point of care to provide safe health care. It could potentially be life saving, Helen said. Yes. Having access to information at point of care is important, but wasn’t care.data about “secondary use” beyond direct health care? So, if it is not for direct health care, then what?

Helen explained that the care.data program is also about understanding what works best and what doesn’t work. She said that without getting and sharing information, we can’t compare across settings and NHS England needs that in order to deliver health care services that are safe and effective. Information is power for the good as well. It is not just scary, she said.

But what is the good? Better care, economic growth? NHS England writes on its website that “we think it would be wrong to exclude private companies simply on ideological grounds; instead the test should be how the company wants to use the data to improve NHS care” and it agrees with The Guardian’s Polly Toynbee who writes “it aids economic growth too, that’s to the good”. But many at the meeting had serious concerns about economic interests. Why is the government giving in to Big Business, a member of audience commented? Others also said that we need to prevent exploitative use of our medical data and “we don’t want an NHS business”.

What’s most at stake, if you ask Phil Booth, is the question of trust (or has it already been lost?). David was also very concerned about the program’s potential to dramatically change the GP and patient relationship and asked: Do you trust the government with your personal data? It is our most sensitive private information; our crown jewels, says Phil. We need to make sure the data is safe. And what about confidentiality? NHS England says the data will be pseudonymised, but with today’s technologies, nothing can escape the hands of those with the right skills and tools. It is in fact possible to identify the person based on the data because if its richness, Phil explained.

I will end by asking the same question David and others from the audience asked Monday evening: What’s the rush?

1 thought on “What is care.data about?

  1. Maggie Mort

    It was a really interesting meeting. We heard that patients/citizens can opt out of care.data by contacting their GP practice and that most of these have a link on their website explaining how to do this. Looking at my own practice website, the blurb about ‘information sharing’ also referred patients to the NHS Choices web page on care data. That page contains the following, which I think is misleading:

    ‘Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked, a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.’

    At the Lancaster meeting we heard about various ways that it is possible to trace individuals using the above data.

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