“There’s a huge upside to digital health data – we just need to manage the downsides.”

Digital data about our health can improve access to health services and contribute to higher quality treatment and care. But when it’s mishandled, people’s well-being is at risk. Are the risks of using digital health outweighing the benefits?

Christian Möhlen: The simple answer is no. The risks do not outweigh the benefits. But there are non-negotiables such as data security and privacy. As a patient, I expect my medical data to stay either in my hands or in those of whomever I trust with it: a doctor I have known since I was a child, a hospital or even my insurer – people I feel comfortable handling my data. But we really need to make sure that non-healthcare interests – be they governmental or commercial – have limits, so as not to allow commercial exploitation. If you are a doctor, for example, any work you do with pharma companies should be regulated; as is already the case in many countries. We can work within those frameworks.
There are real benefits: the lives we can save, the improvements we can make for people and the patients we can empower. When we digitalise services and healthcare systems, there are so many opportunities to personalise care. You have real-world data from the usage of certain medicines down to the level of the individual, and you can track if you need to increase or decrease the dosage without having to see a doctor. In short, there’s a huge upside in digital health data – we just need to manage the downsides.

And how do we manage these risks? How can we ensure that health data doesn’t fall into the wrong hands, and that private companies and big players that process health data don’t misuse it?

Christian Möhlen: This question dominates a lot of discussions, and it’s hard to answer. You can commercialise data within the healthcare sphere, I’m doubtful as to how strong commercialisation interests outside of the healthcare sector are and how high that risk is in reality. No ethical company would build a model based on you having a certain disease, and start selling you specific furniture for example. If we’re taking a look at Western companies, Apple or Amazon, they are companies with commercial interests and they keep users’ commercial data and medical data separate. I read this morning that Apple reacts to the fact that people don't want certain data to be in the cloud, so with the new Apple Watch they leave certain information on the device.
We need privacy regulations – and we already have these in a lot of countries. We also need different levels of privacy, because there’s certain information that patients want to keep private and they want to keep control of. Privacy regulations are an essential part of responsible health data governance. But it’s good if certain things are publicly available. People might be interested to know how well their hospital is doing or how good the healthcare services are where they live. If we as taxpayers are all paying for that system – which I believe is a good thing – we want to understand: What are we getting for our money? If I buy a car, I want to know about its quality, how long it will last and what value I’m going to get out of it. And I expect the same in healthcare systems. People should know whether the healthcare system is improving. This is possible when the aggregated data is broken down for your area – and you have access to it. Because it makes a difference whether you live in a very rural area or in a large city in terms of the quality of healthcare you can expect to receive.
So we need to balance public and private interests with regard to people’s data. You want to have transparent and accessible aggregated data in public healthcare systems.

So, we should have a nuanced approach to privacy regulations?

Christian Möhlen: Yes, we need “privacy by design”. It is technically possible to design a system so that it recognises what is allowed and what is not allowed – it is built into the code. And once this is set, you can’t make any changes, like with blockchain technology. For example, I would be very happy to contribute my data to medical research. But they don’t need to know that my name is Christian Möhlen. This is irrelevant to them. But it’s relevant to my doctor. So, there are certain process steps that only certain people have access to. And we shouldn’t underestimate this: the law works in tandem with the technology to help us get the right level of privacy and security.
Doctors are not IT specialists. So, I’m not sure how good some of the systems are that healthcare professionals are using today. Some of them might not be as secure as they would be in a large tech company, where the data would be encrypted in the cloud. It is much harder to hack large, mature companies such as Microsoft, Amazon or Google, compared to a small local provider.

In our recent Catalyst Dialogue on Digital Health Data Governance you criticised the stereotypical German way of thinking: “Something could go wrong, so we’re better off not doing it”. How can we help people see the benefits of digital health data and overcome their fear that it will be misused?

Christian Möhlen: First of all, I think it’s good to ask questions about technical and security standards and approval processes. But we’re no longer living in a world of classical engineering where you have to completely avoid all mistakes. We can’t anticipate everything and we may need to fix mistakes as we go along. We have to show the costs of not going digital – how much more we would have to pay and how much longer it would take to cure patients. People will not get the same level of care without digitalisation. One of the most striking examples of the speed of digital processes came during the pandemic: after China released the genetic sequence for coronavirus, it took Moderna 48 hours to develop the vaccine. It was all done completely digitally – their algorithm produced the vaccine. Afterwards, it went through a number of approval processes, and it took them six months to actually release the vaccine, but even that was incredibly fast. In the past, it would have taken much, much longer.
I'm not saying we should digitalise everything, but we should let people try. Many of our day-to-day activities are digital already. So, why shouldn’t this be the case in the healthcare system? Look at Sweden: 99% of all prescriptions were electronic there several years ago. In Germany, I don’t know where we are now, but we're years behind. We’re always saying electronic prescriptions don’t work for older people. But last time I checked, more than 20% of the Swedish population were old. So they’ve found ways to make the digital solutions inclusive.
It's also important to involve policymakers and get them talking to tech companies in the healthcare system – because they’re the ones shaping the delivery of healthcare. Patients need to be part of this dialogue, as well. That’s how you allay people’s fears and address misunderstandings.

Do you think people in rural areas and places with poorer infrastructure are more fearful about digital systems, even though they stand to benefit the most?

Christian Möhlen: There is one benefit people in rural areas have that doesn’t apply to the same degree in urban areas. Currently, when a local doctor is unavailable, people in these areas have to travel much further to see someone, and they have a lot less choice. Moving services online can make a huge difference in this respect, because it doesn’t make a difference where the doctor is based – Barcelona, Madrid or two kilometres away. At the same time, new digital services relieve local healthcare infrastructure and free up local doctors for treatments that they can only perform physically. In less developed countries, it may not be a case of choosing between in-person and online appointments: sometimes there is no doctor nearby, so online treatment is the only option. This is clearly a massive improvement.

There are different ways of aggregating data around the world. What are the differences and do we need a common global standard? Do you think there will be a global health data space and global health data usage laws one day?

Christian Möhlen: Is it possible? Of course. We’re moving towards a European Health Data Space and need to allow data to be exchanged across borders so that companies can work properly. But you need to get all the stakeholders to agree to it. You need a level playing field. This is much easier if we have the same technical standards around the world. It’s better for competition, and that leads to more innovation and better quality. Having the same technical standards enables better cross-border operations.
I'm a bit more hesitant to say we will have one global data space in the sense of a cloud. I personally wouldn't want that for my own data because no system in the world is perfect. The CIA has been hacked, the Chinese have been hacked. So, maybe it’s good that we have different clouds and the data is held in different repositories. But that doesn’t mean we can’t have global regulations around minimum standards. We need these because there are such huge potential downsides if we don’t agree on these standards. The WHO could be a forum where we agree on how medical data should or shouldn't be handled.

What should be the role of WHO in this context, especially regarding their Global Initiative on Digital Health?

Christian Möhlen: WHO is a specialised international organisation with experts on healthcare and healthcare systems. And it is a forum that enables constructive exchange between government and civil society, i.e. academics, scientists and people from NGOs and industry associations. We can leverage this space in order to develop inclusive and – most importantly – forward-looking digital healthcare. Because when people come together, it creates momentum for new ideas and improvements. As humans, we have what it takes. I really believe that. When you look at some of the big advancements – they have been around healthcare.

The interview was conducted by Steffi Noelting. This interview has been edited for length and clarity.

Image source: GeraldKnights

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