Sleep Apnoea Testing & Data Privacy – How do they relate?

Data Privacy Day

Today, 28th January is #DataPrivacyDay. If you don’t know why data privacy and seeking help for sleepiness could potentially threaten your income and career, you need to read this.

Data Privacy day

We really do NOT want to discourage sleepy people from seeking help

However, common belief is that we can safely consult our GP and seek their help if we are concerned about feeling excessively sleepy. The GP would check us out and perhaps refer us to a specialist for tests.

So what has Data Privacy got to do with this?

Risks of inaction

If you’ve seen the News, you will appreciate that some people do NOT consult their GP about their known or suspected medical conditions; with tragic consequences for themselves and innocent others.

The risks of inaction are perfectly evident.

Risks of action that inadvertently compromise

What might not be so obvious, is that confidentiality isn’t really that ‘confidential’ anymore.

If you see a GP they are now urged to report unfit drivers to the DVLA. 1 (The poor GP is in a difficult position here – wanting to help you and balancing a requirement to protect the public from harm).

Data Privacy

So, people may turn to the private sector. Sleep apnoea testing is readily available and most people won’t consider that there could be a risk to their privacy. There is an assumption that private data is ‘safe’ as it is kept ‘confidential’ and indeed it’s not shared with a GP or voluntarily communicated by the vendor – after all, that’s what we have data protection for, right?

Sadly that’s wrong too

Testing ‘confidentially’ no longer means medical data is safe from being divulged to others. Particularly if there is a criminal investigation following an accident (such an accident being much more likely if you have undiagnosed and untreated sleep apnoea).

Confidential testing will still associate nominal data (i.e. your NAME) and other identifiers with medical test results and GPs are guided to act on mere suspicion rather than objective, proven fact.

Classification of medical data

TermExplanation
AnonymousNO NAMES are used or any other personal identifiable data.
Your sleep study test results are stored separately from personal identifiable data and nobody - not even snorer.com or the consultant that confirms the diagnosis knows who the report belongs to.
ConfidentialSleep study test results are associated with key personal identifiable data e.g. name, address, DoB, postcode and other identifiers.

If you were unlucky enough to be involved in a serious accident, your medical history could be requested by and released to:

  • the Police
  • your employer
  • your insurer(s)

With the available ‘confidential’ sleep tests your results are still associated with key personal identifiable data e.g.

  • name
  • address
  • date of birth
  • postcode
  • and other identifiers

NHS data has already been sold to insurance companies 2 and continues to be, even though thousands of records were unlawfully sold in the past.

This is why data privacy is important if you want to seek help for sleepiness – ‘confidential’ tests connect you with your results, and these results could be made available to others.

Yes, you could use an alias for ‘confidential’ testing – but if home based you’ll still have to provide correct address details in order to receive the testing equipment, and if you visit a laboratory, then you’ve exposed yourself visually to staff, and probably on CCTV too!

The only viable alternative

Sleep apnoea testing with Snorer.com is very different.

We really do NOT want to discourage sleepy people from seeking help. But if consulting a GP is not an option and you’re concerned about private, ‘confidential’ testing, where your data could be at risk, what are the options?

The only viable option is to make the process anonymous and in so doing, make it risk free. Names, addresses and so on are unable to be connected with results. Even the team at Snorer.com can’t connect the dots if we were asked to.

Funnily enough, anonymous home sleep testing (ASAP™) is exactly what we’re offering, in partnership with Papworth Hospital NHS Foundation Trust. It is available to individuals who want to keep their private information private and to employers where it makes stark economic sense for them to support their employees in diagnosis and effective treatment.

#DataPrivacyDay #DataAware

If you are worried about snoring and/or experience excessive daytime sleepiness consult your Doctor or a sleep trained Dentist. You can find a sleep trained Dentist on our Links page. If contacting your Doctor about sleepiness is not an option for you consider the ASAP Anonymous Sleep Apnea Process℠.

Reference:

BBC “GP’s urged to report unfit drivers to the DVLA” http://www.bbc.co.uk/news/health-34912771 external link icon [accessed 28th Jan 2016]

Reference: The Telegraph “NHS to carry on selling patient records to insurers” http://www.telegraph.co.uk/news/health/news/11256570/Tens-of-thousands-of-medical-records-handed-to-researchers.html external link icon [accessed 28th Jan 2016]