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Safety Informatics: Using every opportunity to learn

11 Sep

by Niels Peek, Research Lead for Safety Informatics theme

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As our world is quickly becoming more connected, a transformative potential emerges to make it safer. Digital technologies are now commonplace within the NHS and in our daily lives, producing rich data on all aspects of health.

For instance, my smartphone captures my whereabouts through its GPS sensor and thus knows that I’m currently in China. It also measures my physical activity by counting my daily steps. The electronic health record maintained by my GP describes all interactions that I’ve had with primary care, including symptoms, observations, measurements, test results, prescriptions, and referrals. Hospital records capture rich data on diseases (e.g. through high-resolution images) and provide detailed accounts of any hospital care that I have received.

Connecting these data sources can help us gain a deep understanding of patient safety issues and the factors that can increase risk. Not only can they tell us that an adverse event has happened (e.g. someone was admitted to A&E) but they can also help us to trace back the chain of events leading up to this (e.g. a trip abroad; followed by a period of staying at home, not feeling well; a GP visit).

Advanced analytical methods such as Artificial Intelligence can subsequently facilitate early assessments of risk, and support patients and clinicians in preventing adverse events. This structured, system-level approach is also known as a learning healthcare system: an integrated healthcare system which harnesses the power of data and analytics to learn from every opportunity, and feed the knowledge of “what works best” back to patients, clinicians, public, health professionals and other stakeholders to create rapid cycles of continuous improvement.

The Safety Informatics theme within the NIHR Greater Manchester PSTRC will utilise the learning healthcare system approach to understand real-world contexts in which safety issues arise and what is required to take corrective actions. We will build on the established “ACTION” infrastructure to provide real-time feedback to primary care clinicians in Greater Manchester which is already used to improve medication safety, support long-term conditions management, and facilitate antibiotic stewardship.Specific projects will focus on:

  • reducing diagnostic errors
  • enabling automated monitoring of late treatment effects in cancer survivors
  • prevention of pulmonary complications after surgery
  • more timely and accurate computer-assisted monitoring of lab test results by both    patients and clinicians.

Controversial care.data programme closed: What did we learn?

12 Jul

by Rebecca Hays, Research Associate in Multimorbidity theme

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After a series of delays, the care.data programme has been closed for good. The decision to end this controversial project was announced following the publication of Dame Fiona Caldicott’s review of health and care data security, consent and opt outs.

The height of the controversy came in February 2014, when the programme was put on hold following NHS England’s highly criticised attempt to inform the public about care.data through a national leaflet drop. Issues with this mail out and the lack of clarity about the project became the subject of many news stories, and a popular topic on social media.

My colleague Gavin Daker-White and I were following the debate on Twitter, where a wide range of views and opinions were being expressed. Tweets highlighted the potential benefits of care.data, revealed worries, provided links to more information, and instructions to opt-out. To better understand the strengths and criticisms of the programme, we undertook a qualitative analysis of tweets containing the hashtag #caredata.

Those for and against the programme shared a range of concerns, including the issues reviewed by Dame Fiona Caldicott. Tweets also identified communication failures, confusion about care.data, and a lack of patient-centeredness. We found these concerns were eroding trust in the healthcare system, which, if ignored, could put patient safety at risk.

Many people will be relieved that the care.data programme has been closed but this is not the end of the story for data sharing in the NHS, and lessons need to be learned. Our work also identified the potential benefits of such projects, for patients and other stakeholders, and recommendations for their design and implementation.

For future programmes to be successful, they must actively engage and involve patients in discussions and decisions about who can access their data and how it can be used. People must also be fully informed about both the risks and benefits of data sharing. Thus, we strongly support Dame Fiona Caldicott’s view that “A key aspect of this work must be a dialogue with the public.”

Note:

Rebecca and Gavin’s paper, “The care.data consensus? A qualitative analysis of opinions expressed on Twitter” was published in BMC Public Health in 2015. A plain English summary [pdf] of this publication is available on our website.