Patients know best?

"Digital infrastructures have to be patient-centred – this is a mantra that every 21st century healthcare politician has learned routinely. In practice, handing over the power to the patient can be difficult though. Privacy concepts and patient rights are not clear-cut. They depend, at least partly, on the technical infrastructure and the security framework that is chosen – and vice versa. The good news is that digital patient involvement can be successful.""More than 80% of the users say that É Saúde is an improvement for the citizens, and nearly 80% say it is an improvement for the health-care system."

Grätzel von Grätz

What is the role of the patient in digital healthcare? For Erik Gerritsen, Secretary General of the Ministry of Health, Welfare and Sport in the Netherlands, there is no hesitating at all when it comes to answering that question: "We want to make the patient the CEO of his own health." Being the CEO of your own health means, according to Gerritsen, having access to your own health data, being able to take more control of your health, sharing data with health-care providers and researchers of your choice, being able to work with health data wherever and whenever you want, and getting feedback on the impact of your lifestyle on your own health.

Many healthcare systems fail miserably on digital patient engagement

Gerritsen is a politician, but his vision is echoed by patient representatives all over Europe. Take Steven Tylor, a representative of the European Blind Union and the UK Royal National Institute of Blind People. For blind people, he said at eHealthWeek 2017 in Malta, eHealth was mostly about streamlining the patient journey, and about having information available at the right time and in the right place. It was also about having access to personal records, allowing effective decision-making and providing a holistic, person-centred picture of health.

This is how it should be. But reality falls short on many of the needs that politicians like Gerritsen and patients such as Tyler describe. For Tyler, this is not a technical issue, but a question of whether the available tools were used or not. "For example, there is absolutely no reason to design an inaccessible website or eHealth system anymore." In addition, many eHealth systems were still designed without consulting patients and practitioners. A main reason for this unsatisfactory situation was that many eHealth systems were still delivered in the name of efficiency, said Tyler: "This is false economy."

Germany: Talking lots, doing little

Lack of patient involvement is not only about failing to make patient portals more accessible to the disabled. Many eHealth projects all over Europe fail to grant citizens – whether disabled or not – basic rights of access – despite clear legal frameworks that are often in place. Take Germany: German politicians are proud to have introduced a law that explicitly addresses patient rights. The law clearly states that patients have the right to access whatever data is stored about them.

This is well-known by doctors and hospitals, and it was celebrated as a huge step forward when it was introduced. But how is it implemented in the age of digital documentation? Believe it or not, patients can ask their doctors to print relevant parts of the digital record, and, depending on how much printing is necessary, they will usually be charged for it. This might make some sense in an institution with an isolated electronic medical record that cannot easily export pdf files. These systems do exist.

But the reality is that even digitally integrated care records that, like in other parts of Europe, have been popping up in many regions of Germany in recent years and continue to do so at an increasing pace, usually don’t feature a patient interface. And in the rare cases they have a patient interface, the patient might be able to look at some data. But he or she certainly won’t have the right to grant access to documents or hide information from individual doctors.

Galicia: 'We felt the need to do more than connect institutions'

Can it be done differently? It can, and thanks to Europe’s diversity, there are examples to be found of either health-care systems or regions or institutions that approach digital patient involvement differently. A good example is Galicia, located in the North-Western corner of Spain. It is a Spanish region with 2.8 million inhabitants, a quarter of which is 65 years or older. There are 15 hospitals and around 500 primary care units. Galicia started to implement a regional electronic health record, called IANUS, 15 years ago.

"There is absolutely no reason to design an inaccessible website or eHealth system anymore."

Until recently, this system has largely been a communication system for medical professionals. Like many records of its kind, it was about patients, not for patients. But in recent years, the need was felt to do more than only connect medical institutions, said Sonia Martínez Arca, Director of the Galician Health Knowledge Agency ACIS. This is why the concept of É Saúde was developed, a platform that brings together citizens, health professionals, and the public Galician health-care system as the payer side. "Active patients help maintain system sustainability," said Arca. É Saúde offers a large portfolio of interactive and personalised health services that are accessible from any device with an internet connection, with a clear mobile first strategy.

There are different security levels in place, depending on the degree of privacy necessary. A public level contains general health information and contact details of, for example, patient associations. A low security level that can be accessed with email address and password, allows citizens to schedule appointments and engage in patient communities. And a high security level that requires users to authenticate themselves with digital ID tools provided by the government of Galicia gives access to personal health information that can, for example, be uploaded by hospitals.

The É Saúde portal and record in Galicia can be taken as proof that patients want these kinds of services. The uptake was pretty good, according to Arca. Eight months after the launch, 22,000 citizens have registered with the platform, and the number currently increases by 1,000 per week. "More than 80% of the users say that É Saúde is an improvement for the citizens, and nearly 80% say it is an improvement for the health-care system," said Arca.

Estonia: 'Patient access is a matter of humanising medicine'

The healthcare system of Estonia is another central, state-controlled healthcare system that is taking patient involvement seriously. The Baltic country has connected its healthcare system to the nation-wide digital security infrastructure. Patients can access data from healthcare providers online via a secure portal solutions. Le Vallikivi is a board member of the Estonian Family Doctor Association. "eHealth is really not my cup of tea," she said, "I am more concerned with patient safety and quality."

Nevertheless, Vallikivi values the digital infrastructure that Estonia has put in place in its healthcare system, and what she values most is the possibility to give patients access to care data: "We have ten years of experience with sharing health data with patients now. And it is really a wonderful thing to do for a General Practitioner, because by doing so, we humanise medicine all day long. This sharing of information is really a big step of humanising medicine." By sharing information, Vallikivi argues, GPs in Estonia were in fact not the gate keepers they are usually considered to be, but rather gate openers for the patients. "Of course there are discussions among doctors about how much information should be shared and whether there is some information that should not be shared at all. This has to be clarified. But in all these years, I only had two or three conflicts with patients who have read their records at home and didn’t agree." And even this, Vallikivi said, was a good thing, because the disagreement between doctor and patient becomes transparent: "We agree to disagree. It becomes official, and then the patient can get a second opinion."

Netherlands: How to involve patients from the bottom-up

Patient involvement becomes a bit more difficult in countries where healthcare IT is not state-controlled. The Netherlands can be taken as an example of this. In the Netherlands, the parliament turned down efforts to establish a central, state-controlled healthcare IT infrastructure a few years ago. As a result, doctors started to build a communication infrastructure bottom-up, which has been relatively successful to this point. There are also regional IHE clusters evolving around radiology providers.

On the patient side, personal health records have evolved in the Netherlands in recent years: "We have ten or 15 of these PHRs, with very different maturity levels," said Erwin Eisinger from the Dutch Ministry of Health. As can be expected in such a situation, interoperability remains an issue. Healthcare data in the Netherlands, according to Eisinger, cannot flow free and secure between the systems of healthcare providers and the systems of patients at the moment, resulting in a very limited degree of patient involvement into data streams in spite of having PHRs available.

The Dutch government and the Dutch Patients Federation want to change this now – without setting up something that might, again, be considered state-controlled. This is where the new MedMij framework comes in. It is not about "prescribing" an obligatory architecture. "We see it rather as a certification," said Eisinger. "If a PHR provider lives by the rules, there will be access to the medical professionals’ data. We are not building a national infrastructure. What we are aiming at is a set of agreements about rights, obligations, incentives, and standards."

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Philipp Grätzel von Grätz

(Germany) specialises in medicine, health policy and, in particular, eHealth and information technology in healthcare. He is one of Europe’s leading journalists in the field and author of the German book Connected Health.

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