[Note update Sept 19th: after the NHS England AGM in the evening of Sept 18th – after this care.data engagement post published 18hrs earlier – I managed to ask Mr.Kelsey, National Director for Patients and Information, in person what was happening with all the engagement feedback and asked why it had not been made publicly available.
He said that the events’ feedback will be published before the pathfinder rollout begins, so that all questions and concerns can be responded to and that they will be taken into account before the pathfinders launch.
When might that be, I asked? ‘Soon’.
Good news? I look forward to seeing that happen. My open questions on commercial uses and more, and those of many others I have heard, have been captured in previous posts, in particular the most recent at the end of this post. – end of update.]
Medical data has huge power to do good, but it presents risks too. When leaked, it cannot be unleaked. When lost, public trust cannot be easily regained. That’s what broken-hearted Ben Goldacre wrote about care.data on February 28th of this year, ten days after the the pause was announced on February 18th [The Guardian] .
Fears and opinions, facts and analysis, with lots and lots of open questions. That’s what I’ve written up in the following posts related to care.data since then, including my own point-of-view and feedback from other citizens, events and discussions. All my care.data posts are listed here below, in one post, to give an overview of the whole story, and any progress in the six months ‘listening’ and ‘engagement’.
So what of that engagement? If there really have been all these events and listening, why has there been not one jot of public feedback published? This is from September 2014, I find it terrifyingly empty of anything but discussing change in communications of the status quo programme.
with vulnerable and excluded groups the article mentions. It was carefully managed, with little open room discussion to share opinions cross groups (as the Senior Policy Adviser at Signature pointed out.) Whilst we got the NHS England compilation of the group feedback afterwards, it was not published. Maybe I should do that and ask how each concern will be addressed? I didn’t want to stand on the NHS England national comms. toes, assuming it would be, but you know, what? If the raw feedback says from all these meetings, these are our concerns and we want these changes, and none are forthcoming, then the public should justifiably question the whole engagement process.
It’s public money, and the public’s data. How both are used and why, is not to be hidden away in some civil service spreadsheet. Publish the business case. Publish the concerns. Publish how they are to be addressed.
Instead, the article above, this reported speech by Mr.Kelsey and its arguments, make me think engagement is going nowhere. No concerns are addressed. PR is repeated. More facts and figures which are a conflation of data use for clinical treatment and all sorts of other uses, are presented as an argument for gathering more data.
Citizens do not need told of the benefits. We need concrete steps taken in policy, process and practice, to demonstrate why we can now trust the new system.
Only then is it worthwhile to come back to communications.
How valued is patient engagement in reality, if it is ignored?
How will involvement continue to be promoted in NHS Citizen and other platforms, if it is seen to be ineffective?
How might this affect future programmes and our willingness to get involved in clinical research?
I sincerely hope to see the raw feedback published very soon, which NHS England has gathered in their listening events. How that will be incorporated into any programme changes, as well as communications, will go a long way to assuring the quantity in numbers and quality of cross-population participation.
The current care.data status is in limbo, as we await to see if and when any ‘pathfinder’ CCGs will be announced that will guinea pig the patient records from the GP practices in a trial rollout, in whatever form that may take. The latest official statements from Mr.Kelsey have been on 100-500 practices, but without any indicator of where or when. He suggests ‘shortly’.
What next for care.data? I’ll keep asking the questions and hope we hear some answers from the NHS England Patients and Information Directorate. Otherwise, what was the [&[email protected]!] point of a six month pause and all these efforts and listening?
Publish the business case. Publish the concerns. Publish how they are to be addressed.
What is there to hide?
After this six-month engagement, will there be a happy ending? I feel patients are about to be left jilted at the eleventh hour.
You’ll find my more recent posts [last] have more depth and linked document articles if you are looking for more detailed information.
March 31st: A mother’s journey – intro
March 31st: Transparency
April 3rd: Communication & Choice
April 4th: Fears & Facts
April 10th: Raw Highlights from the Health Select Committee
April 18th: care.data : Getting the Ducks in a Row
April 23rd: an Ode to care.data (on Shakespeare’s anniversary)
May 15th: care.data the 4th circle: Empowerment
May 24th: Flagship care.data – commercial uses in theory 
June 14th: Flagship care.data – commercial use with brokers 
June 24th: On Trying Again – Project Lessons Learned
July 1st: Communications & Core Concepts  Ten Things Learned at the Open House on care.data and part two: Communications and Core Concepts  – Open House 17th June Others’ Questions
July 12th: Flagship care.data – commercial use in Practice 
July 25th: Care.data should be like playing Chopin – but will it be all the right notes, in the wrong order? Looking forwards.
August 9th: care.data and genomics : launching lifeboats [Part One] the press, public reaction and genomics & care.data interaction
August 9th: care.data and genomics : launching lifeboats [Part Two] Where is the Engagement?
September 3rd: care.data – a Six Month Pause, Anniversary round up [Part one] Open questions: What and Who?
September 3rd: care.data – a Six Month Pause, Anniversary round up [Part two] Open questions: How, Why, When?
September 16th: care.data cutouts – Listening to Minority Voices Includes questions from those groups.
September 16th: care.data – “Anticipating Things to Come” means Confidence by Design
October 30th: patient questions on care.data – an open letter
November 19th: questions remain unanswered: what do patients do now?
December 9th: Rebuilding trust in care.data
December 24th: A care.data wish list for 2015
2015 (updated after this post was published, throughout the year)
January 5th 2015: care.data news you may have missed
January 21st 2015: care.data communications – all change or the end of the line?
February 25th 2015: care.data – one of our Business Cases is Missing.
March 14th 2015: The future of care.data in recent discussions
June 25th 2015: Digital revolution by design: building for change and people (1)
September 12th 2015: care.data: delayed or not delayed? The train wreck that is always on time
Questions, ideas, info & other opinions continue to be all welcome. I’ll do my best to provide answers, or point to source sites.
For your reference and to their credit, I’ve found the following three websites useful and kept up to date with news and information:
Dr. Bhatia, GP in Hampshire’s care.data info site
HSCIC’s care.data site
medConfidential – campaign for confidentiality and consent in health and social care – seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent