If you live in the UK, and would rather your medical information were not stored in a central database (no, not the Summary Care Record database, yet another central database) and given, in a possibly-anonymized-but-no-guarantees form, to researchers and companies, then you need to actively opt out. Yes, really.
See medconfidential.org for how to do it.
Hi, a probably ignorant question here. Why should I be worried about this? What difference would it make if my medical information was public… I can’t see that there is anything I’d want to hide?
Well, there may not be today, but there may be in the future. Are you going to remember to opt out immediately after you are diagnosed with something embarrassing?
The MedConfidential FAQ says:
“Every month, details of your diagnoses, referrals, health conditions and treatments plus ‘lifestyle’ information such as smoking / drinking habits and whether you are obese will be extracted. They will be uploaded to HSCIC together with your NHS number, date of birth, postcode, gender and ethnicity.”
You may also want to stand in solidarity (and spread the word to) those who would prefer their weight, drinking habits and medical conditions not be placed in a large central database with (if other government IT projects are anything to go by, and considering the number of people who will have access to it) poor security. If I were in any way a public figure, I would certainly not want this.