Views & Reviews No Holds Barred

Care.data doesn’t care enough about consent

BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g2831 (Published 22 April 2014) Cite this as: BMJ 2014;348:g2831
  1. Margaret McCartney, general practitioner, Glasgow
  1. margaret{at}margaretmccartney.com

Why is care.data, the government’s flagship NHS patient data programme in England, floundering? It’s consent, stupid. Most citizens who were asked hadn’t heard of the scheme.1 Consent to upload individuals’ medical records was sought by sending a leaflet, which was typically lost among a heap of pizza delivery menus. People who had opted out of receiving junk mail did not get it at all.2

The few who read the leaflet would have found that it didn’t even mention “care.data.” Also, it was heavy on assumed benefits (“find more effective ways of preventing, treating and managing illnesses”) but light on potential harms.3 It did not mention who would handle the data extraction (Atos),4 that records could be sold to private sector businesses, or the risk of re-identification by third parties and how this would be mitigated.5

What if you were unable to read English, had a learning disability, or were practised in the art of shifting unsolicited mail into the recycling? No idea. One survey of GPs, who really should know about it, suggested that 40% were opting out.6 The opt-out nature of the proffered system was a disaster: if people didn’t know they had the option, how could they exert the choice? Now the pause in care.data, announced to “get it right,” feels familiarly ominous.7

NHS England is unlikely to return after the break with a better idea because it hasn’t understood the problem: consent. Is it ever possible to give fully informed consent after reading a leaflet? It has a troubling precedent. We do exactly the same thing when a leaflet about breast or aortic screening is sent through the post with a prebooked appointment. We assume that this informs people sufficiently about screening for them to make a choice, even though it may not benefit them and may cause them harm—through breast removal or cancer treatment,8 or death from treatment for a screen detected aortic aneurysm that was not destined to rupture.9 We do not routinely check understanding or offer to discuss the risks and benefits at the point of entry.10 This isn’t good enough—we all need two way communication with another human being.

Consent is the foundation of trust, and it underpins humane relationships between healthcare professionals and patients. That is why it is an ethical necessity. Yet what consent means and how it should be requested has been subverted by a government that doesn’t really understand what it is and why it is so important. We need to be clearer about who is doing what to whom. Perhaps we should consider patients requesting interventions rather than doctors obtaining consent.

Notes

Cite this as: BMJ 2014;348:g2831

Footnotes

  • Competing interests: I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: I am an NHS GP partner, with income partly dependent on QOF points. I am a part time undergraduate tutor at the University of Glasgow. I have authored a book and have been paid fees for broadcast and written freelance journalism. I am an unpaid patron of Healthwatch and a member of MedAct. I make a monthly donation to Keep Our NHS Public. I am occasionally paid for time, travel, and accommodation to give talks or have locum fees paid to allow me to give talks, but not for drug companies or public relations companies. I was elected to the national council of the Royal College of General Practitioners in 2013.

  • Provenance and peer review: Commissioned; not externally peer reviewed.

  • Follow Margaret McCartney on Twitter, @mgtmccartney

  • Find out more about the doctor behind the column: read Margaret McCartney’s recent BMJ Confidential, “Singing the praises of evidence” http://www.bmj.com/content/348/bmj.g2015.

References

View Abstract