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Side effects of open health data

Recent improvements in the technology to record data, have coincided with calls for making this data freely available. Health related studies are a particular case in point.

At the forefront of these changes, reputable publications have taken measures to set transparency standards.  Since January for example, the British Medical Journal “will no longer publish research papers on drug trials unless all the clinical data on what happened to the patients is made available to anyone who wants to see it.” (Significance magazine Volume 9 Issue 6, December 2012)

In a sector that has often been accused of secrecy, GlaxoSmithKline are also engaged in this spirit of openness. They recently announced that they would make available “anonymised patient-level data from their clinical trials” to researchers “with a reasonable scientific question, a protocol, and a commitment from the researchers to publish their results” (ibid).

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Fig 1. Death rates per 1000 in Virginia (USA) in 1940, VADeaths R dataset (for illustration only)

However, in the past few weeks two stories seem to challenge this trend towards greater transparency. At the same time as rumours grow in the UK of cuts in the publication of well-being data (The Guardian, 10th of July 2013), controversy has arisen regarding the recently released National Health System (NHS) vascular surgeons individual performance records (BBC News 28th of June 2013) .

While the measure has been welcomed by some sectors of the general public, there have been important criticisms coming from the medical side. Several  doctors within the speciality, with perfectly satisfactory records, are refusing to agree to the metric. The argument is that different types and number of procedures coupled with the variability of prognoses make published indicators such as death rates misleading to the patients.

In general, calls have been made for further research into performance indicators that ensure information provided to the end-users is efficacious. As an example of this, back in 2011 when the first attempts to publicise this kind of information started, Significance magazine (Volume 8 Issue 3, September 2011) reported as one of the causes for the lack of success, failure to agree on “which indicators to use”, and also mentioned “discussions with the Royal College of General Practitioners to establish the most meaningful set.”

Tensions between opening up areas of genuine interest to the widest audience and ensuring that there are not unintended side effects, are a societal challenge in which statisticians can play a vital role: sometimes numbers cannot speak for themselves, and appropriate interpretations might be required to avoid wrong conclusions. This becomes particularly important when dealing with health issues…

Note: in Spain, it would seem that there is still much work to be done in terms of open data…. A PricewaterhouseCoopers report (pp. 120 -131) highlights the issue as one of the ten hot topics in the Spanish Health System for 2013, and welcomes the creation of the website www.datos.gob.es as one of the first steps towards openness in this and other sectors.

What are your thoughts on this issue? Are there any similar measures being taken in your country or organisation?

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