Democratising data: the key to better healthcare?

11 February 2019 (Last Updated December 23rd, 2019 10:17)

Giving patients access to their medical data offers an advantageous realignment of the doctor-patient dynamic. But with the benefits come complications, and progress towards digital health goals vary wildly. What are the obstacles still lying in the way of democratising healthcare data, and how can these goals be best pursued in the interest of patient care and sustainable health systems?

Democratising data: the key to better healthcare?
Digital technologies can help patients maintain a dialogue with healthcare providers. Credit: Photo by NEC Corporation of America with Creative Commons license

In the age of information, it’s easy to forget a time when ‘health data’ was limited to scrawls on paper charts, and IT was considered to be on the distant periphery of delivering healthcare to patients.

“When I started in practice, it was at a time when primary care was actually getting its first PCs,” says Charles Alessi, chief clinical officer at healthcare IT non-profit HIMSS International. “It was a machine that was installed, and we would look at it and wonder how to make best use of it.”

Alessi is a London-based physician with 35 years of clinical experience. Beyond his role at HIMSS, which helps healthcare organisations implement digital innovations, he has previously served as chairman of the UK’s National Association of Primary Care and still acts as a senior advisor to Public Health England. In short, he has been supremely well-placed to observe the evolving role of data in healthcare over the last three decades.

“Information was once something that was really only the responsibility of a chief technology officer or chief information officer within an organisation,” Alessi says. “Now information is the lifeblood of health and care, and in many respects it’s impossible to actually deliver health and care to an individual or a population without using digital methods.”

But digital advances aren’t only revolutionising healthcare at the system level; they also hold the potential for unprecedented empowerment of individual citizens through access to their medical records, and even to alter them. Proponents argue this democratisation of health data will engage patients in their own care like never before, and turn the doctor-patient interaction from a one-way street into a proper conversation.

“Giving access to the individual to their own information empowers them,” Alessi says. “The moment they’re empowered, health and care changes. And once you have someone who’s engaged and involved, it’s a completely different conversation, and also potentially a completely different outcome, to the benefit of the individual.”

Democratising health data: changing the conversation

Breaking down the barriers between patients and the health systems that serve them brings enticing opportunities From the patient’s perspective, being able to access their own health records – through patient-accessible health electronic health records (PAEHRs) – is a powerful incentive to take a greater interest in their care, as well as streamlining functions like receiving blood test results.

Physicians will always be needed to contextualise and interpret information, but giving a patient access will help make them an active contributor to a shared care plan, rather than a passive participant who is simply expected to follow instructions. A growing body of evidence suggests that there are a range of benefits in clinical practice, from explicit consent to continuity of care.

“If you were a patient with Type 2 diabetes and I was a physician and I kept on talking to you about the importance of managing your HbA1c, or some other medical parameter, that conversation is often quite a difficult one,” says Alessi. “Firstly you don’t quite understand why this index is important, and secondly, you need to contextualise it. Gaining access to your own information enables you to detect trends; it enables you to see the changes you’re making, and to maintain connection with your health and care.

“All of this enables people to maintain much more of a dialogue with the health system in general. That won’t necessarily mean a dialogue with the physician. There are ways in which one can maintain that dialogue, even using everything from bots to artificial intelligence – all sorts of processes to assist individuals and ensure they maintain that connection. Because what I call the ‘drum beat’ in terms of maintaining that connection is the most important single thing to make sure people are really engaged in their care.”

Uneven progress on data access

The potential is clear, but to what extent is health record access a reality today? As in many fields of digital tech, progress is lop-sided between, and even within, countries. “There’s nowhere that has it all sorted out,” says Alessi.

In the UK, where all patient health records are owned by the Secretary of State for Health, a great deal of progress has been made in the use of digital registries to manage prevalent conditions such as diabetes, cancer and hypertension at the population level, while individual patient access to full health records, which the government has promised by 2020, lags behind many other advanced nations. Even in the Nordic countries – lauded as some of the most progressive in the world for advanced healthcare provision – implementation is uneven.

“[The Nordic countries] may be very advanced in terms of giving access to individuals to their medical records and getting individuals to actually own their healthcare, but they certainly haven’t managed to look at interventions at scale using digital interventions around public health in some areas,” says Alessi. “So it varies from place to place.”

An international study published in Health Policy and Technology in March 2018 compared policies on patient access to health records across ten countries, including Australia, New Zealand, the US, the Nordic countries and several other European nations. The research found although all of the studied countries offered some form of medical record access, the extent and mechanics varied widely, from log-in procedures and user rights to the type of data made available.

“Countries may be able to develop improved policies by examining how other nations have solved common problems,” the study concluded. “Harmonising policies is also an initial step likely to be needed before cross-national PAEHRs could be possible.”

Mitigating the risks of the digital revolution

Of course, there are risks that come along with the benefits of democratising healthcare data. One basic concern is that if patients are given the ability to alter their health record, without strong controls this could diminish the value of the data in a system that needs, as Alessi puts it, “one version of the truth”. A proper and transparent system of auditing- possibly employing blockchain digital ledger technology- could alleviate these concerns.

“I think we’ve moved on from that position,” Alessi adds. “Now we know it’s possible for people to comment on it if necessary, or correct it, as long as there’s an audit trail, as long as that is certifiable, as long as it’s very clear that there may have been a difference of view around an interaction – that’s fine. What’s important is that everything is out in the open and transparent.”

Cybersecurity is also a pressing concern, with malicious hackers evolving their attacks constantly and healthcare systems proving particularly vulnerable, as the 2017 WannaCry ransomware attacks proved. Alessi stresses the importance of the human factor in data security, which would become all the more important if digital health records were made accessible to patients digitally.

Modern security technologies are increasingly sophisticated, and if properly implemented and maintained by trained staff, would certainly trump what Alessi calls the “bad old days of paper records”, when health records were routinely found “in corridors, the backs of cars, all sorts of places”. Nevertheless, assurances around security will be vital to give patients the confidence to go digital with their data.

Prepping for an era of preventative care

The vision of a connected data environment that strengthens the patient’s voice and facilitates wider collaboration on health issues resonates strongly with modern healthcare’s growing focus on preventative care models. If patients could update their records with health data from wearable devices, for example, it would provide a more granular view on patient’s lifestyles and help identify potential risks before they develop into a problem that requires intervention.

The potential benefits are huge, but again there are barriers to overcome. The global healthcare reimbursement landscape needs to continue its gradual expansion to a more value-based care model, where preventing illness is valued as highly as treating it.

“Why would you invest in setting up a system to stop something happening when the only way you’re getting remuneration is when something does go wrong?” Alessi asks. “Clearly the health system metrics that we have used over the last 30-40 years, which are basically activity-driven, are very good for encouraging activity but not necessarily very good for managing population health.”

Organisational change will also be needed to actually take advantage of new insights coming from broader streams of incoming data. Little good will be achieved if general practitioners are expected to monitor whole new data sets while keeping up with their surgery workloads. Machine learning technologies will almost certainly help reduce the burden by flagging health anomalies that need proper investigation, but reorganisation and the creation of new digital health monitoring roles will be needed too.

“I think it’s really important and empowering to use all the wearable data, because it’s obviously an integral part of the health record,” Alessi says. “But you also have to manage the governance of that at the same time as you give access, otherwise we’re going to burn out our physicians and our clinicians in general practice.”

Empowered patients and digitally-enabled health systems clearly throw up a host of complications along with the benefits, but it’s a journey that will be worth the hassle in the long term. And the first step is realigning the human interactions at the heart of our medical systems, giving patients a voice and an active role in their care.

“What’s important is that the actual context of consultations changes, the interactions between people change,” Alessi says. “Digitisation isn’t a transcription of the old-fashioned ways of working from paper on to a computer disc. That’s not digitisation, that’s just the transcription of information on to a different storage system. It really is looking at the whole system and getting people to participate more in their care.”