I don’t know about you but I have found it very hard ever to remember having the Department of Health conduct a consultation and not have the final consultation report say exactly the same things as were said by them before they began. (Think PCEHR Legislation, Opt-Out and the list goes on.)
Well the consultation on the Secondary Use of myHR Data has just closed following many Submissions.
You can download those published up to Sunday 19/11/2017 from this link:
Here is the list of commentators so far.
While I have not read all of them in detail there are some clearly some respondents who have similar views to those expressed in my previously published submission, which has now been placed on the HealthConsult site.
Here is the direct link to mine on the blog:
I think it is reasonable to suggest that most respondents are keen for useful information to be used but want transparency and openness as to how it is used as well as genuine public disclosure of just who is using the data and what they are finding. The need for genuinely ethical usage of the information recurs as does a rejection of using the data for purely commercial and marketing purposes.
At least a few respondents suggested an independent entity to manage access and usage and at least a couple pointed out that the data quality of what is in the myHR now is pretty dreadful.
All we have to do now is wait and see how close the final Framework is to what is being suggested.
Place your bets with your favourite bookmaker!
David.
To listen to learn or not to learn, that is the question.
ReplyDeleteSomehow David I don’t think the bookies would give favourable odds on anything being heard but selective and random out of context phrases.