Search Results for: care.data

#caredata, care.data, communications, confidentiality, NHS, NHSEngland, privacy, transparency, trust, women

care.data – the cut-outs: questions from minority voices

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1] My thoughts on the care.data advisory … Continue reading care.data – the cut-outs: questions from minority voices →

#caredata, care.data, communications, confidentiality, NHSEngland, scope, scope creep

Care.data – my six month pause, anniversary round up [Part 1]

On the 18th February 2014, a six month pause in the rollout of care.data was announced. [1] It’s now September. Six months is up. When will we find out what concrete improvements have been made? There are open questions on plans for the WHAT of care.data Scope and its future change management, the WHO of … Continue reading Care.data – my six month pause, anniversary round up [Part 1] →

#caredata, care.data

Care.data – my six month pause, anniversary round up [Part 2]

In part one, I looked at the status of what data care.data extracts – examining scope, the role of management of scope creep in trust, opt out management, and the who, of accessing our data and for what purposes. Here in part two, I want to give a six-month status update of my opinion of … Continue reading Care.data – my six month pause, anniversary round up [Part 2] →

#caredata, care.data, change management, commercial, engagement, genomics, health, HES, leadership, NHSEngland, politics, privacy, research, trust

Launching genomics, lifeboats, & care.data [part 2]

“On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30].” [Part one of this post is in this link, and includes thinking about care.data & genomics interaction]. Part two: What is … Continue reading Launching genomics, lifeboats, & care.data [part 2] →

#caredata, care.data, communications, engagement, genomics, leadership, NHS, NHSEngland, politics, trust

Launching genomics, lifeboats, & care.data

On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30]. “The UK is set to become the world leader in ground-breaking genetic research into cancer and rare diseases, which will transform … Continue reading Launching genomics, lifeboats, & care.data →

#caredata, care.data, HES, HSCIC, leadership, privacy, research, scope, transparency, trust

care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part one]

Five months after the most recent delay to the care.data launch, I’ve come to the conclusion that we must seek long-term excellence in its performance, not content ourselves with a second-rate dress rehearsal. “Sharing our medical records, is like playing Chopin. Done well, it has the potential to demonstrate brilliance. It separates the good, the … Continue reading care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part one] →

#caredata, care.data, confidentiality, genomics, HES, HSCIC, leadership, NHSEngland, politics, privacy, Tech, transparency, trust

care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two]

How our data sharing performance will be judged, matters not just today, or in this electoral term but for posterity. The current work-in-progress is not a dress rehearsal for a care.data quick talent show, but the preparations for lifetime performance and at world standard. How have we arrived where we are now, at a Grand … Continue reading care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two] →

#caredata, care.data, commercial, confidentiality, HES, HSCIC, NHSEngland

Flagship care.data – [3] Commercial use in Practice

I looked in two previous posts at the background theory [1] to commercial uses of our data, then, the background to my concerns of commercial use with data intermediaries. [2] This is now part three,  my glimpse into commercial use in real-world practice. It’s become rather a saga. Here’s the short version: “In general commercial … Continue reading Flagship care.data – [3] Commercial use in Practice →

#caredata, care.data, communications, NHSEngland, trust

care.data communications and core concepts [Part one]

“My concerns about care.data are heightened, not allayed by the NHS England apparently relentless roll-out and focus on communications. Whilst they say it will take as long as it needs, there is doublespeak talk of Oct-Nov. pilots. It is still all about finding the right communications, not fixing flaws in core concepts.” Today at the … Continue reading care.data communications and core concepts [Part one] →

#caredata, care.data, choice, communications

care.data communications and core concepts [Part two]

“My concerns about care.data are heightened, not allayed by the NHS England apparently relentless roll-out and focus on communications. Whilst they say it will take as long as it needs, there is talk of Oct-Nov. pilots. It is still all about finding the right communications, not fixing flaws in core concepts.” For part one of … Continue reading care.data communications and core concepts [Part two] →