If lots of things get said in a programme of events, and nothing is left around to read about it, did they happen? The care.data programme 2014-15 listening exercise and action plan has become impossible to find online. That’s OK, you might think, the programme has been scrapped. Not quite. You can give your views … Continue reading care.data listening events and consultation: The same notes again?
King: “Who is king here? I remind you, so you remember that? I do not remember any promises. I do not remember anything, except that you are my servant.” Anna: “No, your majesty, that is not true.” What if people controlled their own health data? This is the question Matthew Honeyman of the policy team … Continue reading Care.data, the King and I: an eternal illusion of control and consent?
If you cancel a train does it still show up in the delayed trains statistics? care.data plans are not delayed (just don’t ask Healthwatch) Somerset CCG’s announcement  of the delay in their care.data plans came as no surprise, except perhaps to NHS England who effectively denied it, reportedly saying work continues.  Both public statements may be true but … Continue reading care.data: delayed or not delayed? The train wreck that is always on time
This wraps up my series of thoughts on ‘Building Public Trust’ since the NIB Bristol meeting on July 24th. It has looked at how to stop chasing public trust and instead the need to become organisations that can be trustworthy [part 1]. What behaviours make an organisation trustworthy [part 2]. Why fixing the Type 2 … Continue reading Building Public Trust : Future solutions for health data sharing in care.data
care.data communicating the benefits as its response to the failed communications in spring 2014, has failed to deliver public trust, here’s why: To focus on the benefits is a shortcut for avoiding the real issues Talking about benefits is about telling people what the organisation wants to tell them. This fails to address what the … Continue reading Building Public Trust : “Communicate the Benefits” won’t work for care.data
Let’s assume the question of public trust is as important to those behind data sharing plans in the NHS  as they say it is. That the success of the care.data programme today and as a result, the very future of the NHS depends upon it. “Without the care.data programme, the health service will not have a … Continue reading Building Public Trust in care.data datasharing : three steps to begin to build trust
Here’s my opinion after taking part in the NIB #health2020 Bristol event 24/7/2015 and presentation of plans at the June King’s Fund hosted event. Data sharing includes plans for extraction and uses of primary care data by third parties, charging ahead under the care.data banner. Wearing my hat from a previous role in change management and communications, I share … Continue reading Building Public Trust in care.data sharing : Seven step summary to a new approach
This is a repost of my opinion piece published in StatsLife in June 2015. The majority of the public supports the concept of using data for public benefit. But the measurable damage done in 2014 to the public’s trust in data sharing  and reasons for it, are an ongoing threat to its achievement. Rebuilding trust and the public … Continue reading care.data : the economic value of data versus the public interest?
Call the midwife [if you can find one free, the underpaid overworked miracle workers that they are], the care.data ‘pathfinder’ pilots are on their way! [This is under a five minute read, so there should be time to get the hot water on – and make a cup of tea.] I’d like to be able … Continue reading Are care.data pilots heading for a breech delivery?
They say ‘every little helps’. care.data needs every little it can get. In my new lay member role on the ADRN panel, I read submissions for research requests for any ethical concerns that may be reflected in wider public opinion. The driving force for sharing administrative data research is non-commercial, with benefits to be gained for … Continue reading The Economic Value of Data vs the Public Good?  care.data, Concerns and the cost of Consent