In Depth England's care.data scheme has suffered from popular misconceptions.

Published on November 4th, 2014 | by Travis Korte

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Misconceptions Threaten England’s Health Data Sharing Program

England’s National Health Service (NHS) has been collecting and sharing data on various aspects of hospital care for decades, which it uses to inform medical research, allocate funding  and fight fraud, waste, and abuse. However, the agency does not yet collect the same information from general practitioners (GPs), which most people visit much more frequently than hospitals. In an effort to close this information gap and paint a more complete picture of the country’s health system, NHS is planning to integrate anonymous data from GPs into its centralized database on an opt-out basis in an initiative called care.data. This fall, the agency is set to begin a pilot program at 265 practices across the country, but some  groups have opposed care.data and called for an opt-in system instead. However, many of these critics’ concerns about an opt-out approach are simply overblown, and an opt-in scheme would be unnecessarily costly and reduce the quality of the program’s data.

Many of the concerns care.data critics cite in opposing the program, such as patients being under-informed, doctors being at risk of losing their patients’ trust, and insurance companies having access to the data to increase individuals’ rates, are overblown. First, the British Medical Association (BMA), which represents doctors, argued that patient awareness of the scheme was too low. However, NHS has actively marketed the program—between February and the end of the summer of 2014, NHS took part in over 150 local and regional events discussing the care.data program. NHS also postponed the program for six months in order to better publicize its benefits. Second, the patient group Patient Concern argued that GPs risked losing the trust of their patients, who might feel constrained in giving their doctors the full picture of their health if they were uncertain about how their data might be used. However, patients who better understand the program’s benefits will have little reason to withhold information from their GPs. As public awareness increases, this concern will fade. Third, articles in a number of publications, including The Guardian, expressed concerns that patient data would be sold to insurance companies and enable them to increase rates. However, NHS has categorically denied that it would provide patient data for such a purpose.

Moreover, an opt-in approach to care.data would be inefficient, both from a cost and a data quality perspective. It is likely that a large percentage of patients would be indifferent to the program or would see the benefits of contributing their data while not being passionate enough about it to go out of their way to opt in. Placing the burden on NHS to attract and seek active consent from these patients would be needlessly costly when the agency could simply let individuals who do not want to take part in the program opt out on their own. In addition, NHS would likely see fewer total participants take part in an opt-in system. Since the benefits care.data offers are mainly societal rather than individual, only those patients who are especially passionate about the program would be expected to opt in, whereas collecting patients’ data by default and allowing them to opt out would allow care.data to include these patients along with patients who are indifferent to the program. Increasing the size of care.data’s dataset in this way would increase its value to medical research, quality of care assessments, and funding allocation studies since more of the population would be represented.

Considering the large societal benefits the program could have, NHS should examine other ways to reduce the number of patients who opt out. For example, the agency could incentivize GPs to inform their patients about the benefits of the program by tying some of the funding it provides to a GP to the opt-out rate among that doctor’s patients. With care.data, NHS has a major opportunity to improve numerous aspects of England’s health system. Better data could mean better quality of care for patients across England, insight into life-threatening diseases, and more efficiently funded hospitals. NHS should not acquiesce to critics’ overblown concerns over risks to GPs and third-party access to data and risk reducing the impact of its important program.

Photo: Flickr User Intel Free Press

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About the Author

Travis Korte is a research analyst at the Center for Data Innovation specializing in data science applications and open data. He has a background in journalism, computer science and statistics. Prior to joining the Center for Data Innovation, he launched the Science vertical of The Huffington Post and served as its Associate Editor, covering a wide range of science and technology topics. He has worked on data science projects with HuffPost and other organizations. Before this, he graduated with highest honors from the University of California, Berkeley, having studied critical theory and completed coursework in computer science and economics. His research interests are in computational social science and using data to engage with complex social systems. You can follow him on Twitter @traviskorte.



  • JP

    “NHS took part in over 150 local and regional events discussing the care.data program” > at which informed patients have asked hundreds of questions, none of which feedback has yet been published with answers. “NHS also postponed the program for six months in order to better publicize its benefits” > There has been no communications to reach the majority of the 52 million people general public since January 2014. There are many process and content questions which remain unanswered. If these could be addressed, both technically and from a patient’s confidence point of view, it would be on a much stronger footing > jenpersson.com/pathfinder/

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