‘Gaming’ consent, and how YOU can help

medConfidential is deeply concerned at the growing use of enforced Subject Access Requests by insurance companies to acquire cut-price back-door copies of an applicant’s entire medical record, while at the same time we are seeing pharmaceutical companies deny researchers access to individual-level detail on clinical trial results for which volunteers’ explicit consent should have been freely granted.

It seems that in both cases companies are taking a position based on corporate self-interest rather than the patient’s or public interest. They are ‘gaming’ consent. Information cannot be both ‘nothing to worry about’ when companies want it to make decisions about you, yet ‘too sensitive to reveal’ when it exposes them and their decisions to scrutiny; mandatory on the one hand, prohibited on the other.

Only last week, the European Medical Agency modified its plans to allow researchers to print and copy clinical trial reports – information necessary for safe, independent evaluations of whether drugs work the way the companies selling them say they do. Meanwhile insurers continue to push patients into handing over their entire medical history via Subject Access Requests. Of course a SAR also gives the insurer far more information than they would receive from a properly paid-for GP report, which they will then keep for later use.

Forms we’ve seen include wording like, “You do not need to give your permission, but if you do not, we will not be able to proceed with your application”and“This will give us permission to obtain a full copy of your health records from your doctor so we can assess your application or any future claims(our emphasis). The language is often understated and companies adopt different ‘nudge’ approaches, e.g. providing applicants with a SAR-only consent form but making them specifically request a GP report form.

We’re hoping you can help build an evidence base, providing a wider range of examples to demonstrate the systematic nature of these problems.

We don’t want your personal information! But if you have a copy of a clinical trial medical record release consent form (from 2010 onwards) or if you have been given a Subject Access Request consent form so an insurer can get records from your GP (again, from any time after 2010) please could you scan or e-mail a digital copy to forms@medconfidential.org?

If all you have is a filled-in copy of your form, please remove or black out all of your personal details before you send anything. If you’re not sure how to do this, or if you have any other questions, please email forms@medconfidential.org – our apologies if it takes us a few days to get back to you, we are busy fighting on a number of fronts at present.

What we are after is the wording of the forms themselves, such as the lines we quoted above. It is these we intend to share with other organisations; language about data re-use will likely be of interest to colleagues on the allTrials.net team and we’re sure the Information Commissioner will pay close attention to the varied forms of coercion used around Subject Access Requests.

If you don’t have a form, you can still help by tweeting or passing on a link to this article. The more examples we can gather, the stronger the case.