The context
Health organisations generate vast amounts of data, some of which can provide both health professionals and the general public with insights that can inform their choices. The great majority of this data is very useful at an aggregate level that does not allow patient identification. In spite of this a good deal of controversy on health datasets and their release has arisen recently. Very often the conversation has been polarised and contentious, and has moved away from the benefits of releasing non-identifiable healthcare data.
Although the merits of these discussions are beyond the scope and terms of reference of the Open Data User Group, we believe that a positive approach to health-related Open Data is needed.
This is why we are pleased, and as a medical school employee I'm personally pleased, to announce the publication of a benefits case in support of the release of an authoritative dataset of GP and Dental Practices.
The aim of this benefits case is to provide strong evidence for the collection of a comprehensive dataset of medical practices and its publication under an Open licence, preferably the Open Government Licence (OGL). This dataset should include vital information like practice details, surgeons list, services, opening times, location, patients acceptance criteria (or catchment areas), etc...
When simple datasets are useful and popular
Why are we looking at a simple dataset like the list of medical practices? First of all, because this is a very useful dataset that is currently missing from data.gov.uk; more worryingly, there are currently multiple versions of a "GP dataset": NHS Choices, the Health and Social Care Information Centre (HSCIC) and the Care Quality Commission (CQC) all provide a list of GPs. However, there are doubts about the quality and frequency of updates of each dataset and, what matters most to ODUG, these are not all released under OGL or equivalent licence, with the General Medical Council (GMC) charging for access to its non-open dataset.
In our daily lives we often call on our GP for our primary medical needs; GPs know a good deal of history about their patients and other medical professionals need to be able to contact them effectively and quickly. A patient who is admitted to A&E might find the outcome of their visit is improved if the hospital team can quickly get in touch with their GP.
On the day GovLab launched its report about Open Data in Health and Social Care, Tim Kelsey, National Director for Patients and Information for NHS England, said: “There’s an urgent need for the NHS to use better information and evidence to guide decision-making and investment for better outcomes for patients. A key element of this is open data. We know with scientific and medical research, the rate of discovery is accelerated by better access to data".
We want to extend this notion of openness to administrative data because it is part of what the general public, health workers, and businesses need.
It is important to start a general discussion on the release of health-related open data, because it can help save lives and provide opportunities to improve the efficiency of healthcare. We decided to start from a dataset whose release is non-controversial. It is also one of the most requested datasets on data.gov.uk, confirming our commitment to a demand-led prioritisation of Open Data releases.
Redefining the process of releasing open data
From a technical point of view, there is also another reason why working on this dataset is important: the definition of an effective data release process in a complex scenario. In fact, as far as GP an Dentists data is concerned:
- the data is collected by several organisations (GMC, NHS, CQC, HSCIC)
- these organisations have different goals
- by virtue of these different goals they collect different records
- these records require update with a diverse range of frequencies
- there is uncertainty about data copyright and ownership.
Working on this dataset is an exemplary case to address the issues of ownership, custodianship and collaboration in the field of Open Data, and could be used as a blueprint in other contexts. We have already engaged with representatives of these organisations and the response about what we are trying to achieve has been absolutely positive.
The opportunities ahead
We are publishing this benefits case because we have a positive vision about the future of Open Data in healthcare, a vision that can be exemplified by the release of a GP dataset. This release could achieve:
- improved power of choice for patients
- easier communications between health professionals
- increased scope for research, by cross-referencing data
- new opportunities for businesses to build healthcare location and evaluation services and apps
- the creation of a dataset that will certainly constitute part of the National Information Infrastructure (NII)
A final call for feedback
We hope that the release of this dataset will be widely supported at all levels. In any case, we are eager to keep engaging with the Open Data community on this benefits case and would welcome feedback from people in all categories: patients, Open Data and privacy activists, health professionals and business representatives.
3 comments
Comment by Owen Boswarva posted on
I've put comments into a blog post. In principle I support the production of a more comprehensive GP dataset. However I was generally unpersuaded by the arguments in the benefits case. I do like the idea of releasing data from the Medical Register.
-- Owen Boswarva, 22/07/2014
Comment by puntofisso posted on
You make some interesting points, Owen. I disagree with some of the negative remarks, of course, but I welcome the scrutiny. I still think the idea of a single dataset is a good one. For details, I've responded on my personal blog.
Comment by Owen Boswarva posted on
Thanks Giuseppe. I've updated my post with a link to yours and some additional comments.
-- Owen Boswarva, 24/07/2014