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In this blog Asthma UK's Andrew Cumella explains why it's so important we improve the use of healthcare data across the health and care system and the role charities can play to support this.

Data interacts with every aspect of people’s care, from a GP consultation to being used in research on new treatments that could save your life. Getting data right is about more than just making life easier for administrators and analysts, it is about saving lives through better coordinated care or research breakthroughs. The recent publication of the Richmond Group’s My data, my care report highlights this importance through a series of thought-provoking and broad-ranging case studies. Encouragingly, the report shows that many of the potential solutions to data-sharing difficulties are out there already. There is no lack of innovation or ideas in the NHS, but leadership, implementation and system buy-in remain as significant challenges to progress.

The importance of getting data right

My data, my care is broad in scope, showing just how crucial getting data right is to every part of the health system. Asthma UK highlighted a case in the report that showed the tragic consequences of data not flowing between primary and secondary care. Tragically, Tamara Mills, a 13-year-old in Newcastle died of an asthma attack, despite seeing GPs and attending hospital 47 times in the four years prior to her death. Although the majority of asthma care takes place in primary care, thousands of people with asthma, like Tamara Mills, require hospital or out of hours care every year. Joining up existing data will allow this care to be better. If clinicians can see what has happened then they can make more informed decisions, and avoid duplications in care and possibly incorrect prescriptions. It will allow people’s care to be viewed as a whole picture or story, rather than a single episode. This situation is not just limited to people with asthma. It is an issue that is bigger than a single condition, or a single group of stakeholders. Anyone whose care spans more than a single location could be receiving uncoordinated care, and could benefit from their data being shared.

The role of charities in the future of data

Improving data sharing and raising the awareness of this issue is critically important to Asthma UK and the Richmond Group. We know that we need to have an ongoing conversation with people on why sharing data is important and build people’s trust and confidence to do this. Failure to engage the public on just how important data sharing is to saving lives, the quality of care and to future treatments is one reason this issue has not been resolved (such as the failure of the programme), after years of trying. Charities have a huge potential role in helping to bridge the gap between the NHS and the public on data sharing. But this is not a one-off exercise and it is not for charities alone to do the heavy lifting. Instead, charities are working to influence key players (including the National Information Board (NIB) and the National Data Guardian (NDG)) and ensuring the patient voice is heard, the NIB and NDG are held to account and that patient data is held in a secure manner with the right safeguards. By engaging at this early stage, we are ensuring that the role of charities in patient data is embedded in what will be a long-term exploration on data ethics and infrastructure. This is going to take years and will need to be a continuous discussion as new opportunities arise to improve care and data infrastructure.

What next for data?

We are at a crucial juncture in the conversation about patient data, and the My data, my care report adds an important voice to the debate. Since the laboured life of the programme was brought to an end, renewed efforts to improve health data sharing have made steady progress. The next few months promise to be an important period for this issue, with the Health and Social Care (National Data Guardian) private members bill currently at committee stage at the House of Commons. This bill aims to put the NDG on a statutory footing and embed the role at the heart of data sharing and data governance.

We also expect a response soon on the consultation on the proposed single-question model for data-sharing consent and ten data security standards. Both the Richmond Group and Asthma UK responded to this consultation, which closed in September 2016. This response should hopefully provide reassurance that the essential data infrastructure (including necessary security standards) needed for data that works for patients, healthcare professionals and researchers are in development. We also hope that the eventual publication of this response will provide guidance on the Government’s plans for public engagement on data sharing, though this may come at a later date.

There’s still a huge amount of detail and work to do before data-sharing and data security can best work for patients, but there’s reasons for optimism that a new arrangement can be reached that makes the best use of data for patients and researchers. This potential new agreement would be more of a starting point for a sustained conversation that considers and responds to new developments than a conclusion to this issue. Asthma UK and the Richmond Group will monitor and continue to make sure the voice of people with long term conditions is heard in these developments.