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Conference report: Give patients control of their data to make healthcare more effective

Spain

As more health data gets stored and analysed, the challenges of governance and culture stand in the way of progress, a Science|Business Healthy Measures conference heard. A solution: citizen involvement

Joan Rodón Mòdol, associate dean at ESADE Business School

LONDON - The health sector is sharing and storing more and more data in the cloud. To many experts on health administration, that creates both opportunities and challenges.

The opportunity is in the flexibility it allows for researchers, administrators and clinicians to work with the data, study the outcome of treatments on patients, and implement reforms in the health system. Patient “outcomes will be defined in a learning process, and for this to happen, systems must be flexible,” said Joan Rodón Mòdol, associate dean at ESADE Business School.  

But the difficulty, Rodón Mòdol continued, lies in having all that sensitive patient information collected together – raising concerns about security and privacy. “People feel the cloud is centralised; that it is more difficult to have autonomy.”  

The answer, according to specialists attending a Science|Business Healthy Measures conference hosted by the University of Warwick Medical School on 16th December, is in the governance of the data: who controls it, who can access it. If the governance is set well, the benefits of all that data will follow. And good governance, the specialists said, must involve the patients.

“For me, collaboration is the key to going forward,” said Stephen Bromhall, general manager of GE Healthcare Digital. “The technology is here; it exists. We need to get politicians to agree what we can do with the data and how we can collaborate. There is a big debate to be had.”

There are three broad reasons to share health data – to promote better care, to benchmark from one healthcare provider to another and to provide the feedstock for an innovation ecosystem for R&D, said Alec Price-Forbes, consultant rheumatologist and lead for the Electronic Record Programme at the University Hospitals of Coventry and Warwickshire NHS Trust “We need a conversation with citizens and patients: they need to understand it is their data, not clinicians’.”

Counting the benefits

On the benefits of sharing and using data, there are already many strong examples. One is medical imaging where, as Bromhall pointed out, the number of scans done across the globe is growing and there are not enough radiologists to interpret them. Embedding big data and machine learning tools allows for better use of radiologists’ time. “It makes the job easier and allows them to focus on more complex cases,” Bromhall said.

Bromhall noted that data held in the cloud is not stored outside the national geographic boundaries where it is collected. However, strong governance of patient information is essential if data is to be used to its full potential in research, and so that the power of digitisation can be realised, for example in imaging. “We want to make radiology more effective,” Bromhall said.

Prescribing is another area where better data would promote better outcomes, said Price-Forbes. With more than 10,000 drugs in the formulary it is impossible to know all their side effects and how they may interact with each other. Even though the NHS has an electronic prescription system, it is still possible to prescribe the wrong drug. “Digitisation could pull in data from other sources, including a patient’s information and information on side effects, and so influence decision-making at the point of care,” Price-Forbes said.

Examining the obstacles

Despite these hopes, however, there is still a long way to go. While many aspects of life have been transformed by technology, “the National Health Service is still like the 1960s,” said Price-Forbes. The antiquated way in which the system operates means it can take two years from seeing a general practitioner to getting a referral for a rheumatology consultant. In Price-Forbes’ view, the focus in gathering and handling information should be on the requirements of patients and clinicians. “You need to put data in users’ hands,” he said.

There are some registries that record patient outcomes - for example, the UK National Joint Registry, which since 2002 has been collecting information on the outcomes of joint replacement surgery. But, said Price-Forbes, “the quality of surgery is irrelevant if co-morbidities are not dealt with….We need to work from the perspective of the patient.” This requires inputs from a range of specialisms. “You have to look from the clinical specialty point of view, but you need to put information in the hands of patients so they can manage their own healthcare.”

For Rodón Mòdol, one reason why healthcare systems are failing to exploit the diversity of data – including that held in non-health organisations – is that efforts to integrate and move to open data have been top-down, government-led initiatives that failed to win hearts and minds. “We should give control of data to citizens,” he said.

That is not to say that everyone would act at an individual level, but that citizens could delegate intermediaries to manage information sources and oversee collective action in specific disease areas. “In Spain there is a lot of mistrust about projects put forward by government. We need to change the governance models over who controls the data,” Rodón Mòdol said.

Price-Forbes suggested that if people have concerns about the security of electronic health records, they should consider the lack of security of current paper-based systems. Information being sent by post to patients, “is being delivered to the wrong address each day by the bucket load,” he said.

 

 

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