Tag Archives: technology

#caredata, care.data, change management, leadership, mental health, NHS, NHS England

Thoughts on Digital Participation and Health Literacy: Opportunities for engaging citizens in the NHS [#NHSWDP 1]

“..smartphones […] the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond “

That’s what Simon Stevens said at a meeting on “digital participation and health literacy: opportunities for engaging citizens” in the National Health Service this week, at the King’s Fund in London.

It seemed a passing comment, but its enormity from the Chief Executive of the commissioning body for the NHS, made me catch my breath.

Other than inspiration from the brilliance of Helen Milner, Chief Executive of the Tinder Foundation – the only speaker who touched on the importance of language around digital participation – what did I take away from the meeting?

The full text of Simon Steven’s speech is below at the end of this post, but he didn’t elaborate further on this comment.

Where to start?

The first thing I took away to think about, was the impact of the statement. 

“the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond “

So I thought about that more in a separate post, part two.

The second, was on consent.

This tied into the statement by Tim Kelsey, Director of Patients and Information at NHS England. It seems that the era when consent will be king is fast approaching, and I thought about this more in part three.

The third key learning I had of the day, which almost everyone I met voiced to me was, that the “best bit of these events is the learnings outside the sessions, from each other. From other people you meet.”

That included Roger who we met via video. And GP Dr Ollie Hart. All the tweeps I’ve now met in real life, and as Roz said, didn’t disappoint. People with experience and expertise in their fields. All motivated to make things better and make things work, around digital, for people.

Really important when thinking about ‘digital’ it doesn’t necessarily mean remote or reduce the people-time involved.

Change happens through people. Not necessarily seen as ‘clients’ or ‘consumers’ or even ‘customers’. How human interaction is supported by or may be replaced by digital contact fascinates me.

My fourth learning? was about how to think about data collection and use in a personalised digital world.

Something which will be useful in my new lay role on the ADRN approvals panel (which I’m delighted to take on and pretty excited about).

Data collection is undergoing a slow but long term sea change, in content, access, expectations, security & use.

Where, for who, and from whom data is collected varies enormously. It’s going to vary even more in future if some will have free access to apps, to wifi, and others be digitally excluded.

For now, the overall effect is perhaps only ripples on the surface (like interruptions to long-term research projects due to HSCIC data stops after care.data outcry) but research direction, and currents of thought may shift fundamentally if how we collect data changes radically for even small pockets of society, or the ‘worried well’.

My fifth learning, was less a learning and more the triggering of lots of questions on wearables about which I want to learn more.

#digitalinclusion is clearly less about a narrow focus on apps than applied skills and online access.

But I came away wondering how apps will affect research and the NHS in the UK, and much more.

[Next: part two #NHSWDP 2: Smartphones: the single most important health treatment & diagnostic tool at our disposal – on wearables]

[And: part three #NHSWDP 3: Wearables & Consent: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care?]

*****

Full text of the speech given by Simon Stevens, Keynote speaker:

“The reality is we all can see that we’ve got to change […] as part of that we have got to have more integrated services, between primary and specialist services, between physical and mental health services, and between health and social care services.

“And the guiding principle of that integration has got to be care that is personal, and coordinated around individuals, with leadership of communities and patient groups.

“There is no way that can happen without a strong, technological underpinning using the information revolution which is sweeping just about every other part of the economy.

“We are not unusual in this country in having a health sector which has been a little slower, in some respects, than many other parts of national life to take full advantage of that.

“We are not unusual, because that is the experience of health services in every industrialised country.

“We obviously have a huge opportunity, and have a comparative advantage in the way that the NHS is organised, to put that right.

“We know that 8 out of 10 adults are now online, we know that two thirds of people in this country have got smartphones which is going to be the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond.

“But we know we have got 6.4m people who are not.

“And so when you of course then get serious about who are those six and a half million people, many of them are our highest users of services with the greatest needs.

“So this is not an optional extra. This has got to be central about what the redesign of care looks like, with a fundamental power shift actually, in the way in which services are produced and co-produced.

“This agenda goes to the heart of what we’ve got to get right, not just on inequalities but around co-production of services and the welcome steps that have been taken by the organisations involved, I think that the point is obviously we have now got to scale this in a much more fundamental fashion, but when you look at the impact of what has already been achieved, and some of the work that has already been done by the Tinder Foundation, you take some of the examples here, with the Sikh community in  Leicester around diabetes, and parenting in other parts of the country, you can see that this is an agenda which can potentially get real quite quickly and can have quite a big impact.

“The early evaluation anyway indicates that about half of people involved say they are leading healthier lives on the back of it, 48% in healthy eating, a third do more physical activity, 72% say they have saved money or time.

“Given that we are often talking about resource poor, time poor communities, that is hugely impactful as well.

“So my role here today, I think is simply to underline the weight that we place on this, as NHS England nationally, to thank all of you for the engagement that you have been having with us, and to learn from the discussion we are about to have as what you see where you see key priorities and what you need from us.”

[March 18, 2015 at the event “Digital Participation and Health Literacy: Opportunities for engaging citizens” held at the King’s Fund, London]

 

#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 Pause in the care.data performance? I looked at the past, reviewed through the Partridge Review meeting in [part one here] the first half of this post from attending the HSCIC ‘Driving Positive Change’ meeting on July 21st. (official minutes are online via HSCIC >>  here.)

Looking forward, how do we want our data sharing to be? I believe we must not lose sight of classical values in the rush to be centre stage in the Brave New World of medical technology. [updated link  August 3rd]* Our medical datasharing must be above and beyond the best model standards to be acceptable technically, legally and ethically, worldwide. Exercised with discipline, training and precision, care.data should be of the musical equivalent of Chopin.

Not only does HSCIC have a pivotal role to play in the symphony that the Government wishes research to play in the ‘health & wealth’ future of our economy, but they are currently alone on the world stage. Nowhere in the world has a comparable health data set over such length of time, as we do, and none has ever brought in all it’s primary care records into a central repository to merge and link, as is planned with care.data. Sir Kingsley Manning said in the current July/August Pharma Times article, data sharing now has to manage its reputation, just like Big Pharma.

reputation
Pharma Times – July/Aug 2014 http://www.pharmatimes.com/DigitalOnlineArea/digitaleditionlogin.aspx

Countries around the world, will be watching HSCIC, the companies and organisations involved in the management and in the use of our data.  They will be assessing the involvement and reaction of England’s population, to HSCIC’s performance. This performance will help shape what is acceptable, works well and failings will be learned from, by other countries, who will want to do the same in future.

Can we rise to the Challenge to be a world leader in Data Sharing?

If the UK Government wants England to be the world leader in research, we need, not only to be exemplary in how we govern the holding, management and release of data, but also exemplary in our ethics model and expectations of each other in the data sharing process.

How can we expect China [1] with whom the British Government recently agreed £14 billion in trade deals, [2] India, the country to which our GP support services are potentially poised to be outsourced through Steria [3] or any other organi 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, change, HSCIC, travel, women, words

Thinking to some Purpose – a new era, a new look

Regular readers here or on twitter, may notice the new-look.

I’m moving away from The Amateur Book Blogger banner, and will be posting simply as me, as I go on.  The start of the summer holidays seemed as good a day as any, to saunter out into the sunshine on my own.  [I may even see if it’s worth updating my resultant twitter handle @TheABB]. The reason? This week, the View From Here Magazine announced it will be closing on November 1st, 2014. After seven  years on the writing team, it is not only the end of an era, but perhaps the start of a something new.

I started on the comms side, announcing writing events and industry news, and later moved into interviews. It’s been an amazing experience. Editor Mike French was a great remote-mentor. We’ve met only once, at the launch of his latest novel, Convergence, in The Dandelion Trilogy.  Mike both enabled and encouraged me to interview some great writers, editors, scouts and publishers, every quarter. I learned something new each time, from every contribution, and had great fun. All of which I enjoyed, but some stand out in the memory more than others, and every one was unique.

I travelled to The London Book Fair in 2010, the year the Icelandic volcanic ash prevented many traveling from abroad by plane.  The resulting bonus, many people’s meeting schedules became unexpectedly less full. I got squeezed in to film a serendipitous  interview with Jamie Byng at Canongate and  spoke with Helen Garnons-Williams, which led to producing a three part interview with her, the then newly head-hunted Editorial Director for Fiction at Bloomsbury UK.

Thank you to all whom I have interviewed since 2006, but also to readers and fellow unpublished writers who supported me, the team, and made the community at The View From Here what it is. With eclectic tastes, I learned much on writing, but also enjoyed the art of the creative collective.

The most recent interview I did for them, was here, with Isabel Allende. In her wide ranging career, it was hard to know what to ask and how to narrow it down, but one thing stays with me, in all she said, on the role of a writer:

“Writers have no obligation to comply with the official story or the official version, their only obligation is with their own consciousness.  Honesty above all.”

The other part of my writing recently has been more akin to her engagement in politics and civil society. I’ve been on twitter really only for the last nine months, throughout the difficult pregnancy of care.data, pronounced care [dot] data. If you missed it, that’s the government proposed scheme to suck up our GP medical records, merge them with data already held at the central Health and Information Centre from our hospital care, and then use the new, richer record for commissioning purposes and potentially more, as yet undefined.  Since our hospital and other health sourced-data is already sold to private companies and will continue to be so in future, but without having asked for informed consent, I’ve been a very skeptical critic and lay voice for positive changes for these wide secondary uses. [In case you’ve landed here for the first time,  I’ve a background in tech database implementations, communications and change, and I took it upon myself to fully understand and follow the subject, a year ago when I came across the topic online, by accident.]

It looks now, as though some improvements on past failings will  happen, but much remains undefined in detail, and as we all know, that’s where the devil likes to sup. I look forward to seeing some of the recently discussed changes and definitions in the Care Act, for example, becoming concrete.

So, that’s the reason for the insignificant changes on my part, and should I explain the image? I’ve chosen my favourite coffee mug for my header photo, with my favourite scarf. I use both often. The latter, reminds me a little of Bridget Riley’s op art. As a retro fan that appeals to me. The former, depicts the cover of Susan Stebbing’s most popular work Thinking to some purpose (1939) which was described on the cover of the first Pelican Books edition as being:

“A manual of first-aid to clear thinking, showing how to detect illogicalities in other people’s mental processes and how to avoid them in our own”

The work arose out of a synopsis she wrote for a series of radio broadcasts intended for the BBC. Published on the eve of the Second World War, Stebbing wrote:

“There is an urgent need to-day for the citizens of a democracy to think well. It is not enough to have freedom of the Press and parliamentary institutions. Our difficulties are due partly to our own stupidity, partly to the exploitation of that stupidity, and partly to our own prejudices and personal desires.”

Her words seem very timely.

To borrow from Wikipedia here: “This metaphor seems to me to be appropriate, because potted thinking is easily accepted, is concentrated in form, and has lost the vitamins essential to mental nourishment. You will notice that I have continued  the metaphor by using the word ‘vitamins.’ Do not accept the metaphor too hastily: it must be expanded.”

I wrote about use of language and the need for common sense in its use around our health, as well as food marketing, in a previous post. But on the book, Professor Stebbing [British philosopher 1885- 1943] went on to say:

“Potted meat is sometimes a convenient form of food; it may be tasty, it contains some nourishment. But its nutritive value is not equivalent to that of the fresh meat from which it was potted. Also, it must have originally been made from fresh meat, and must not be allowed to grow stale. Similarly a potted belief is convenient; it can be stated briefly, sometimes also in a snappy manner likely to attract attention. A potted belief should be the outcome of a belief that is not potted. It should not be held on to when circumstances have changed and new factors have come to light. We should not allow our habits of thought to close our minds, nor rely upon catch-words to save ourselves from the labour of thinking. Vitamins are essential for the natural growth of our bodies; the critical questioning at times of our potted beliefs is necessary for the development of our capacity to think to some purpose.”

So here’s to that, my ‘critical questioning’ may have shifted from one arena into another, but I hope I continue ‘thinking to some purpose’.

#caredata, communications, leadership, Tech, transparency

Appendix F. For successful technology, reality must take precedence over public relations.

Richard Feynman
Richard Feynman via brainpickings.org bit.ly/1q1qWLt

June 6th 1986. Six months after the disaster, the Report to the Presidential Commission was released about The Space Shuttle Challenger.

Just over twenty eight years ago, I, like fellow children and citizens around the world, had watched the recorded images from January 28th 1986. We were horrified to see one of the greatest technological wonders of the world break up shortly after launch and crash into the sea minutes later. The lives of Challenger’s seven crew were lost, amongst them the first ‘ordinary citizen’ and member of the teacher in space project, mother of two, Christa McAuliffe.

As part of the follow up audit and report, Richard Feynman’s personal statement was included as Appendix F. Personal observations on reliability of the Shuttle. You can read his full statement. Below are just his conclusions and valuable lessons learned.

“If a reasonable launch schedule is to be maintained, engineering often cannot be done fast enough to keep up with the expectations of originally conservative certification criteria designed to guarantee a very safe vehicle. In these situations, subtly, and often with apparently logical arguments, the criteria are altered so that flights may still be certified in time.

They therefore fly in a relatively unsafe condition, with a chance of failure of the order of a percent (it is difficult to be more accurate).

Official management, on the other hand, claims to believe the probability of failure is a thousand times less. One reason for this may be an attempt to assure the government of NASA perfection and success in order to ensure the supply of funds. The other may be that they sincerely believed it to be true, demonstrating an almost incredible lack of communication between themselves and their working engineers.

In any event this has had very unfortunate consequences, the most serious of which is to encourage ordinary citizens to fly in such a dangerous machine, as if it had attained the safety of an ordinary airliner.

The astronauts, like test pilots, should know their risks, and we honor them for their courage. Who can doubt that McAuliffe was equally a person of great courage, who was closer to an awareness of the true risk than NASA management would have us believe?

Let us make recommendations to ensure that NASA officials deal in a world of reality in understanding technological weaknesses and imperfections well enough to be actively trying to eliminate them. They must live in reality in comparing the costs and utility of the Shuttle to other methods of entering space. And they must be realistic in making contracts, in estimating costs, and the difficulty of the projects.

Only realistic flight schedules should be proposed, schedules that have a reasonable chance of being met.

If in this way the government would not support them, then so be it. NASA owes it to the citizens from whom it asks support to be frank, honest, and informative, so that these citizens can make the wisest decisions for the use of their limited resources. For a successful technology, reality must take precedence over public relations, for nature cannot be fooled.”

Richard Feynman, 1918 -1988

“The Challenger accident has frequently been used as a case study in the study of subjects such as engineering safety, the ethics of whistle-blowing, communications, group decision-making, and the dangers of groupthink. It is part of the required readings for engineers seeking a professional license in Canada and other countries.” [Wikipedia]

Feynman’s Appendix F: Personal Observations on Reliability of the Shuttle is well worth a read in full.

From a business management point of view, Lessons Learned are integral to all projects and there is no reason why they cannot apply across industries. But they are frequently forgotten or ignored, in a project’s desire to look only ahead and achieve future deliverables on time.

Lessons learned can make a hugely important contribution to positive change and shaping outcomes. Assessing what worked well and how it can be repeated, just as important as learning from what went wrong or what was missing.

Public relations efforts which ignore learning from the past, and which fail to acknowledge real issues and gloss over reality doom a project to failure through false expectation. Whether due to naivety, arrogance, or under leadership pressure, it can put a whole project in jeopardy and threaten its successful completion.  Both internal and external stakeholder management are put at unnecessary risk .

In the words of Richard Feynman, “For successful technology, reality must take precedence over public relations.”