Nov 24th, 2015
Care.data – Have your say results
By Nat Whalley
70,221 members of 38 Degrees have taken the survey to date
“I do not think that my medical information should be a subject for sales analysis. Further, it worries me that some people, whose medical situation leaves them vulnerable, would be more exposed to exploitation.”
“Private companies cannot be trusted with personal data – just look at the breaches recently – Talk Talk, Sony, MoonPig; the list goes on. True, even government agencies aren’t immune, but the more organisations that have access to our data, the more likely it is to be breached.”
“My personal medical data should not be used without my consent for any purposes. I object most strongly to private companies making a profit from the NHS and even more so when it’s my data that provides the means to make that profit.”
| What’s your opinion about Care.data? | |
| It’s a good idea to use medical records for life-saving research, but profit-making companies should not have access to them | 64.79% |
| Medical records shouldn’t be added to Care.data, even if they will only be used for medical research and improving healthcare | 34.32% |
| I’m equally happy for my medical data to be shared with public scientists or profit-making companies | 0.74% |
| I don’t have any concerns about Care.data | 0.15% |
| If your concerns aren’t addressed, would you consider opting out of Care.data to prevent your medical records being included? | |
| YES. | NO |
| 98.05%. | 1.95% |
“I answered “yes” to the above question because I am very concerned at my medical records being available to anyone or any company which would include Virgin, Serco or any pharmaceutical company without my prior knowledge and consent.”
“Opted out last time, would do so again if it’s for commercial gain. More than happy to give consent within the NHS only if it supports better health outcomes rather than profit.”
“I can’t imagine any scenario where these private companies wouldn’t use this data against me – for example, to increase health insurance or travel insurance premiums. That’s not how insurance is supposed to work….”
| Would you be more likely to opt-out of Care.data if your medical records were going to be accessible to private companies like Virgin, Serco or big pharmaceutical companies? | |
| YES. | NO |
| 98.23%. | 1.77% |
“I have experience of data management in the NHS and family experience of Serco’s involvement with healthcare. The security of data in the NHS is not water-tight and I would trust commercially driven firms far less. Pharmaceutical firms may gain much from anonymised data but the problem still resides in a profit motive-would our NHS then be highly charged for the final fruit of the research it had enabled?”
| Who do you trust with your medical data? Please tell us how much you trust the groups below: | A lot | a little | not at all |
| GPs | 76.43% | 20.06% | 2.44% |
| Other NHS staff | 59.65% | 34.50% | 4.61% |
| Private health companies | 1.49% | 20.11% | 76.90% |
| Pharmaceutical companies | 0.60% | 12.71% | 85.58% |
“If my medical records were to be included in Care.data I would need to know that anyone accessing those records would be fully accountable to public scrutiny. That would never be possible within the private sector; business confidentiality would undoubtedly be used to block such scrutiny.”
“Any medical conditions I might have should be shared only with the relevant health care personnel. Such information is private & I have a right to my privacy. I would have no control over who accesses such personal information if private companies answerable to shareholders for making profits have this information.”
“I would not want my private medical data to be accessed by profit-seeking companies – even if only anonymously. The data the NHS holds is potentially a huge public asset, to the benefit of scientific and medical research. The value of this asset should be properly recognised – not cheaply monetised by organisations like Virgin.”
“The record of Virgin, Serco et al. in health matters is very poor. No profit-making company could be trusted not to misuse NHS national data to tailor its services and offers, so as to increase profits – completely contradictory to the ethos of the NHS.”
