Would you be happy for drug companies to have access to your medical records if it helped save someone’s life, even if it wouldn’t improve the quality of yours? That’s exactly what’s in the pipeline – and I’m all for it.
This week the Prime Minister announced that anonymous medical records of NHS patients will be made available for private health companies to access. The purpose? To help drive innovation and invention in new drugs and therapies.
Having access to more information to help develop new treatments is a good thing in my book. But I do have some concerns about the nitty gritty.
Lots of ‘what ifs’
The default option will be for all patients’ data to be made available. It will then be up to us to opt out if we don’t want our information used. Recent incidents show that the government doesn’t have the best track record when it comes to keeping people’s information secure – but then neither do private companies.
Of course we often only hear about the bad stuff, as that’s what makes good news. Day in, day out, our data is handled safely and securely, yet people still worry about it.
The drugs companies say they want this information for research, but who’s going to be monitoring it to ensure it doesn’t end up in their marketing departments? At the moment, drug companies cannot market directly to patients, but what if this changed and the anonymous information became linked with people’s real details?
And what if this data does get into the wrong hands and ends up being sold to the likes of insurers or future employers? I’m looking at getting life insurance at the moment, so the last thing I need is to be pestered by cold callers selling insurance. More importantly, information about your health history could prove invaluable to insurers looking for reasons to charge you higher premiums.
Let’s increase chances of medical breakthroughs
Then there’s the fact that we’re opted in automatically – will people be told they can opt out at any time if they want to? When Summary Care Records were introduced, a lot of people were confused about whether they had to have them or not, and this was with a national mail drop explaining what was happening.
In certain circumstances (organ donation for example), a pre-ticked box is a good thing, but it’s not always appropriate. When it comes to advancing drugs innovation, I think it’s a good thing.
Lack of awareness or just not getting around to it often means people don’t opt in. So by default, fewer people would opt out. And this means there will be more information available for researchers, and therefore more chances of medical breakthroughs.
Personally, I think this is a good step forward, as long as it’s managed correctly and the data is kept secure. There is a great opportunity to see better drugs and therapies for some horrible diseases. But would you be happy to let your medical records be used for the ‘common good’? Or will you be opting out?