Daily Bulletin

The Conversation

  • Written by The Conversation
imageWho's peeping at your files?files by Harry Huber/shutterstock.com

Can it really be that giving pharmacists access to their customers' prescription information, even those pharmacists based in a supermarket, is viewed as a problem? After all, when done so using their professional credentials and code of conduct, with your explicit permission to do so, it seems an example of sensible data sharing.

But in England in 2015, this exact scenario has been reported as “Now Tesco has access to your medical records”, with the implication the medical data will be used for marketing purposes. This looks like a serious overreaction – even though there are justified concerns about the introduction of this scheme and its operational processes.

One particular centralised NHS patient database is called the Summary Care Record, from which this particular use of medical data is drawn. There are some uncertainties on what data is included now and in the future, and on what consent patients have given. But these are not nearly as substantial as the many problems that already surround the – entirely different – care.data database.

And that is the problem: the painful, two year saga over care.data has significantly eroded public trust in NHS England and in the government’s capacity to treat people’s medical records responsibly and competently. Not nearly enough has been done to regain that trust before embarking on other ill-defined schemes.

No lessons learned

On the contrary, only this June the government sought to access GP appointment data including sensitive details, bypassing GPs and patients and instead going directly to the medical systems suppliers. The backlash on this move was effective and a U-turn rapidly followed, but it confirmed what many already suspected about the government’s cavalier attitude to medical confidentiality.

NHS England, meanwhile, has been running a year-long propaganda campaign for care.data. The Department of Health’s latest quango, the National Information Board, has just finished a series of public meetings, in which they have also been commenting on the care.data fiasco. A “failure to communicate the benefits” is apparently still the explanation – no progress there then.

imageThe brand isn’t enough to make patients trust the NHS.comedynose, CC BY

Competence and good intentions

Rebuilding trust is not easy, and it never happens fast. The public needs to be convinced of both competence and honourable intentions within NHS authorities and the government.

So far, both are lacking. The fiasco of the NHS National Programme for IT, finally abandoned in 2011 at a cost of billions, still resonates in the people’s minds. Major data breaches are still too frequent, including of medical data, and thus security worries have only added to the existing doubts in this area.

The Partridge report in 2014 on NHS data sharing identified weak procedures and sloppy practices, concluding that “it is not clear if data has been released for appropriate purposes in all cases”. Following the scandal in 2014 where medical data was sold to insurance firms, tighter definitions of “appropriate purposes” had been expected. Instead, by limiting such use to “the promotion of health” in the 2014 Care Act, the government has made only the most vague constraints on data sharing. In terms of convincing the public of their respect for privacy, this was a missed opportunity.

Reports from the Health and Social Care Information Centre, which manages access to NHS data for third parties, show data continuing to flow to commercial customers such as data brokers and analytics companies. It’s unclear how this satisfies the principle that there should be “no surprises” for patients in how their medical data is dealt with.

Rebuilding trust with patients

imageFiona Caldicott, appointed patients' National Data Guardian in November 2014.Crown Copyright

While the appointment of Lady Fiona Caldicott as the national data guardian should have been a major step forward, even this has been undermined by the postponement of the legal basis for her role, and the fact that the 52 questions she’d demanded answers from the government regarding care.data in 2014 remain unanswered.

Ultimately, what NHS England and the UK government should do is to face privacy and security risks head-on. Newspaper headlines and the public’s response reveal that these are not just the concerns of fringe privacy campaigners, worries that stand in the way of great health research and public service efficiencies. People are rightly concerned about where their medical data goes, and it’s about time the government and NHS authorities shouldered the responsibility of listening and doing something about it.

Eerke Boiten receives funding from EPSRC for the CryptoForma Network of Excellence on Cryptography and Formal Methods, and the Kent Academic Centre of Excellence in Cyber Security Research. He participated as an external reviewer in the 2015 Nuffield Bioethics report on Biological and Health Data.

Authors: The Conversation

Read more http://theconversation.com/patients-will-resist-medical-record-sharing-if-nhs-bosses-ignore-their-privacy-fears-46147

Writers Wanted

The Benefits Of Using An Aluminum Deck Railing


Can I have a pet and be housed, too? It all depends...


The news media bargaining code could backfire if small media outlets aren't protected: an economist explains


The Conversation


Morrison Government commits record $9B to social security safety net

The Morrison Government is enhancing our social security safety net by increasing support for unemployed Australians while strengthening their obligations to search for work.   From March the ...

Scott Morrison - avatar Scott Morrison

Ray Hadley's interview with Scott Morrison

RAY HADLEY: Prime Minister, good morning.    PRIME MINISTER: G’day Ray.   HADLEY: I was just referring to this story from the Courier Mail, which you’ve probably caught up with today about t...

Ray Hadley & Scott Morrison - avatar Ray Hadley & Scott Morrison

Prime Minister's Remarks to Joint Party Room

PRIME MINISTER: Well, it is great to be back in the party room, the joint party room. It’s great to have everybody back here. It’s great to officially welcome Garth who joins us. Welcome, Garth...

Scott Morrison - avatar Scott Morrison

Business News

6 Fundamentals to Know When Running A Business

You started a business or stayed in business for a year. Excellent, but do you know how to build a thriving business, especially in these tough times? Below are tips that will help guide you in stee...

News Co Media - avatar News Co Media

TransferWise changes name to Wise after 10 years

Works towards meeting international banking needs of Aussie consumers, businesses and banks beyond money transfers   Melbourne, Australia, 23 February 2021 - TransferWise, the global technolog...

Wise - avatar Wise

Know the important tips in choosing an SEO agency for your business

The success of your business is based on the quality of your website and hence you need to make sure that your business website is easily navigable so that more people will enjoy spending time going t...

News Co - avatar News Co