Analytics – Whose data is it anyway?

There are a growing number of techniques which might be described by the term “health analytics” which are able to use patient data (generally pseudonymised) for a range of valuable purposes which can help identify opportunities to delver more appropriate, better quality and more cost-effective care. With the challenges healthcare faces using information more intelligently is not optional – We need to do all we can to facilitate the development and application of better health analytics.

There are many governance issues associated with using data for these purposes, which are not the topic of this piece, but suffice it to say there are real concerns, but concerns which can be addressed to ensure patient’s privacy and wishes are respected.

The application of analytics typically requires the extraction and linkage of data from more than one source and this requires the corporation of application designers and those organisations that host systems to facilitate access and the extraction of data. Designers and hosting companies (often one and the same) have some legitimate concerns with regard to risks to the integrity of their systems and operational impact of data extraction, but I’m concerned that some are less cooperative than they might be , sometimes to the point of being obstructive, going well beyond what can be justified by their legitimate concerms. My particular experience is in primary care, where access to practice hosted systems has generally be possible where the practice wish it, but with the growth of hosted systems control seems to be shifting to system suppliers.

It seems to me that it is the customer (more specifically the customer’s Data Controller or Caldicott Guardian) who should be in control of who is allowed to extract data from systems after satisfying themselves of the appropriateness of the data extract and that all patient privacy and any other governance issues have been appropriately addressed. Purchases of IT system should ensure that suppliers are contractually required to provide facilities to support approved extractions in a timely manner, but should understand that this may have an impact on the cost and/or service levels in a hosted environment. The basic facilities required should be no more than those any adequate system should provide as part of its standard reporting tools, but some of the requirements particular to analytics purposes (e.g. pseudonymisation, or the ability to run standard queries like HQL (Miquest, GPES)) might reasonably require additional facilities which might attract additional charges.

The requirements of health analytics are sometimes better met by third-party tools rather than the native reporting tools of individual systems and purchasers of systems should ensure that API’s are available that will allow third-party tools to connect efficiently.
Many suppliers see commercial opportunities in the exploitation of data in customer systems that they supply or host and I have no problem with their exploiting such opportunities subject to the following caveats:

• In general patient’s should be the final arbiter of how their data is used for secondary purposes. They should be made aware of such uses and have an opportunity to object (as required by both the NHS Code of Confidentiality and GMC Guidance.

• Their customers, not the suppliers should be in full control of how data in systems is used and they are responsible for ensuring such use is appropriate and respects patient’s confidentiality and wishes and meet other governance requirements.

• While supplier s may work with their customers to develop services based on secondary uses of data, they should not seek to restrict customers from working with any other party they may choose.
The actions of some suppliers to create artificial technical barriers to data extraction (e.g. by imposing arbitrary limits on the number or records that can be extracted or refusal to make available appropriate APIs to allow third parties to connect to their systems) are unacceptable and customers should ensure that contracts exclude such anti-competitive behaviour.

Opening up information to health analysis and scrutiny to all those with an interest in doing so is central to Government policy and the key to identifying opportunities to delver more appropriate, better quality and more cost-effective care. Subject always to respect for patient’s wishes and privacy, other barriers to access to information need to be swept aside.

(Declaration of interest. My company, Woodcote Consulting has a number of clients who we advise in relation to the extraction of data for analytic purposes.)

We Made It! Nick and Ewan’s Grand Union Canal Adventure for the Neuroblastoma Society

Just to let you all know that we both successfully completed our cycle ride down the Grand Union Canal on schedule on Wednesday raising over £6,750 (plus a gift aid supplement from the Tax Man of  more than £1,200) for the Neuroblastoma Society.

If you donated, thank you for your support. We plan to keep the Just Giving page open for a few more days and will send you one last email when we know the final total.

If you have yet to donate (perhaps you thought we would not make it) this will be possible for the next few days www.justgiving.com/nick-ewan

We cycled from the start of the canal at Warwick Bar in Birmingham to the very end of the Paddington Arm. This is 140 miles of towpath and we cycled 160 miles in total between leaving from and returning to my home in Leamington Spa. We did about 45 miles on the first three days and about 25 on the last day.

We found the ride challenging, as significant sections of the towpath are hard going managing to be variously soft and dragging, bumpy, muddy and/or overgrown. The best sections are generally those through built up areas the worst in the countryside (particularly between Napton Junction and Braunston) although surprisingly the first half of the Paddington Arm in West London was very poor. On good sections we managed to average about 10-12 mph while on rougher sections we were down to less than 5 mph. The forecast had been dreadful, but the weather panned out better than we could have hoped and we only did about 5 miles in the rain including the last two miles into Paddington in torrential rain (if it had been like this for more of our trip I don’t think we would have made it).

Nick fell off his bike once and both of us came close to ending up in the canal on a couple of occasions (we declined my daughter’s suggestion than we should stage a canal plunge in Paddington for the benefit of Youtube) We did not suffer any bike problems with our specially purchased Kevlar reinforced tyres fending of the many thorns and some broken glass.

We said hello to everyone we passed on the towpath and those who passed by in boats. The response rate to our greetings feel significantly South of Berkhampstead confirming Nick’s Geordie view of unfriendly Southerners

We are now both home, aching slightly, a bit fitter and maybe a tiny bit less fat. Apart from a pint a lunchtime on the first day (which we regretted) we can confirm that the suggestions from some of you that we would stop for a beer at every pub were ill-founded and we resisted the temptation until the end of each day by which time we too tired to manage more than a couple of pints.

Thanks to all of those that supported us, particular Ewan’s wife Alison, for collecting us from Braunston at the end of the first day and returning us there the following morning, Neill Jones for meeting us at our dreadful hotel in Bletchley and taking us out to Bistro Blanc in Milton Keynes for dinner and Ewan’s daughter Iona for waiting in the pouring rain to photograph the end of our run. Also thanks to those who joined us on route or on Wednesday evening in London and us course all of you who generously donated to the Neuroblastoma Society.

You will find various photos on Nick’s blog www.nick-booth.blogspot.com

We have some thoughts of a challenge for next year, we shall see?

Nick and Ewan’s Grand Union Cycle Adventure

Please help us help The Neuroblastoma Society

Not health informatics this time, but the planned adventures of two health informaticians – myself and my old friend and colleague Nick Booth. (http://linkd.in/kpNnXQ) who plan to cycle the length of the Grand Union Canal from Birmingham to London.

I was inspired to do this as a result of my local cycle rides around Leamington Spa, where I live, which includes a section of the Grand Union and wondering what it would be like to cycle all the way to London. I suggested this to a few friends who though if it were to be done it should be done properly and that we should start in Birmingham (adding 30 miles) and do the whole length of the canal. So that’s the plan, but all the friends other than Nick have found reason not to join us.

As you might imagine the canal does it best to take the flattest route possible, but this is not the shortest and the canal meanders a bit (145 miles compared with just under 100 for the crow) there are a few flights of locks to climb and the odd hill where we can’t follow the canal under a tunnel, but overall its downhill with a 350 feet descent.

The towpath is of variable quality and while some stalwarts do it in a day Nick and I plan to do it over 4 ending up at Paddington Basin, rather that the slightly closer original end of the canal at Brentford.

We have had nearly nine months to plan and train but while there has been some training planning really only started last weekend and planned reductions in weight and improvements it fitness have not been quite as we had hope. Both off us know we can comfortable do the required 40 miles in a day, but are not so confident about doing this four days in a row.

So to give us a motivation to finish we have decided to try to raise some money for charity at the same time. This will maximise the glory if we make and the embarrassment if we don’t and we have chosen to support the Neuroblastoma Society of which our mutual friend Steve Smith is Chair. www.nsoc.co.uk

In July 1997, just before her first birthday, Steve’s younger daughter was diagnosed with an aggressive form of cancer. Like most people he had never heard of neuroblastoma, but learned a lot over the next few weeks and months as she was treated with chemotherapy and surgery. Her treatment was effective and she’ll be 15 in a few weeks, but the majority of the 100 or so children who are diagnosed every year in the UK are not so fortunate – more children die of neuroblastoma than any other form of cancer.

Steve’s been a member of the Neuroblastoma Society for a few years now and is currently the chair of the Trustees. The charity raises funds for research into the causes and treatment of this disease, aiming to ensure a happier outcome for more children and their families. Over the years the Society has made grants exceeding £2.5M, a great effort for a charity which depends entirely on volunteers.

The Society is the biggest single funder of research in this field in the UK and a lot of this work just wouldn’t happen without it. The next grant round kicks off later this year and Steve and his colleagues are trying to make sure they have £1M available.
The more you donate the more difficult it will be for us to give up after the first 3 miles and the more we are likely to suffer so please give generously.

Just go to

www.justgiving.com/Nick-Ewan

So please dig deep and donate now.