Riding the wave of digitalisation for public health – Interview with Clayton Hamilton

Further to an insightful session on the value of evidence in outcomes-based healthcare at this year’s European Health Forum Gastein, we sat down with Clayton Hamilton, leader of the WHO Regional Office for Europe’s Initiative for Digitalization of Health Systems, Division of Health Systems and Public Health at the WHO Regional Office for Europe, to talk about challenges and future trends in digital health, his passion for innovation and WHO’s role in supporting Member States on their journey towards digital innovation in health systems,

Clayton Hamilton

Clayton, after working in the area of digital health for more than 20 years, how would you describe the development of this field in the past years?

CH: Very generally, I think that, over the last five years, digital health has turned a major corner. It has grown as a discipline and in terms of its implementation size: while previously people thought of it as an add-on to health services, health care delivery and health information exchange, people now see digital health as front and center, and as a catalyst to a lot of the system transformation that we are looking to undertake. That is a move towards patient centered and integrated care.

Digital health continues to develop in a multitude of ways and encompasses everything from electronic health records to mobile health, to more emerging technologies, such as artificial intelligence and personalized medicine; and, of course, in between there are also a lot of medical devices and standards for interoperability and information exchange.

Digital health is certainly both comprehensive and complex, which I think is very exciting and also an immense challenge, because we have to define and classify digital health in a way that can be standardized and understood by everyone.

Given digitalisation’s rapid growth and complexity, what do you think are the next innovations in the field of digital health and the use of outcomes-based evidence?

CH: I think the outcomes-based evidence is critically important, maybe more so now than ever before. We have a lot of innovations ongoing, many of which show a certain level of promise. What we need is to make sure that we have appropriate mechanisms to measure their cost-effectiveness, safety, reliability; and from that we can actually precipitate evidence that can be used to compare, clarify and base decisions upon. What we want is to avoid for the key decisions in health policy and administration to not be based on real evidence. So, the main issue is how you connect different data sources from across the health system in order to be able to actually obtain that reliable evidence and – most importantly – that such evidence is based upon high-quality data.

What do you think are the main challenges in collecting real-world outcomes-based evidence?

CH: Well, the main challenge, again, is that the evidence is multifaceted and is often stored in a multitude of siloed systems. Even two, three, five years ago, clinical systems and hospital information systems were very much focused around a single institution and the exchange and management of patient pathways within one institution. They rarely considered how to exchange information outside of their own four walls. So again, we have to come back to standards for data exchange and interoperability: how do we ensure that the quality of data is to the highest level it can be and how do we exchange that data between different entities in the health sector?

There are also other challenges related to how data will be used and how do we assure the consent of individuals so that their data can be used appropriately and in an ethical way. Another challenge relates to the question of how we can leverage some of the new technologies in the best possible way for not only clinical care, but also for public health use. And I think this is both a challenge but also a very exciting point to address.

How do you define WHO Europe’s role in promoting and implementing the reasonable use of real-world outcomes-based evidence?

CH: WHO’s commitment to supporting Member States’ in their national implementation of digital health is anchored in a new initiative requested by the Regional Director for WHO/Europe known as the Digitalisation of Health Systems, which is being implemented under the leadership of Dr Hans Kluge, Director for the Division of Health Systems and Public Health. The purpose of the initiative is to bring – in a holistic way – all of the technical and non-technical aspects of digital health implementation together so that we can clearly define the necessary building blocks and develop a road map to achieve digital success at national level. This includes an examination of the validity and use of real-world evidence and how it can be used to supplement other mechanisms for monitoring health system performance. We are also fully aware that this is not something we can or should do in isolation. Therefore, part of the initiative involves bringing together all of the relevant partners and stakeholders to provide a consolidated support offering to the 53 countries in the WHO European Region.

Following-up on this, do you think this is also a chance for WHO to take on a leading role in this innovation process and to show that the Organisation is prepared to support Member States to address the challenges that might arise during the process?

CH: Definitely, and I think there has been a huge shift in the Organisation towards not only realizing that it has to take on a leadership role, but that it is now actually actively engaged in delivering on that in the context of health systems strengthening and public health innovation. So yes, this is a chance for the WHO to renew its promise to the Member States, but also to define what it means to develop best practice within digital health and really take on a public health perspective.

In your opinion, what are the three arguments you would use towards policy-makers to make the case for investment in digital health information infrastructure?

CH: Number one is that it will certainly lead to more efficient and effective health systems and health care. For policy-makers, it is about avoiding the waste of resources by bringing individual pieces together and creating more effective and efficient health systems. These will ultimately lead to higher quality at a patient outcome-level and that is really important.

Accordingly, the second point is about ensuring equity in the delivery of care. In light of the WHO’s goal of achieving universal health coverage, that means we need to ensure that each and every individual, each and every citizen, has access to the health care services they need without risking financial ruin or impoverishment. If policy-makers do not effectively leverage digital health, I am not sure we can achieve this public health goal.

The third argument is a rather future looking objective that policy makers have and relates back to the untapped value of data. Policy-makers are aware that high-quality health information is not only key for the future of healthcare delivery, but it is also an asset to help better manage the health system. In the future, we need to look much broader into how we can use data from both inside and outside the health sector for these purposes. The challenge for health systems will be to bring all of these elements together to effectively focus on the individual and move our health care from a treatment-based approach to a more preventative approach.

We would like to close with a more personal question. While you have been talking, one can see your passion for this topic. How come you got interested in digitalisation and digital health?

CH: Well, it is an interesting question. I am not sure if I was just at the right place at the right time, but I’ve always had a strong interest in various facets of technology. Already in my very early career as a consultant in Sydney, Australia, where I grew up, I had the fortune of working for a number of health technology companies. This was at a time when the concept of digital health did not even exist. It was very much a futuristic thing and I think that, since then, it has been like riding a wave. Almost every twist and turn has exposed something new, something exciting, and something intriguing.

I think what has also really kept me smiling and interested is knowing that digital health is having an impact on improving the life of many people and that in some small way, I have an opportunity to bring together the people and resources necessary to make a real difference. The next generation of youth is going to experience the digitalisation of health and health care and the potential of public health to really make the impact it has always promised. This is what keeps me going.

This interview was conducted by Young Gasteiners Patricia Dundler and Ramona Ludolph

Patient Relevant Outcome Measures and Meaningful Patient Engagement – for the good of all: Interview with Nicola Bedlington

Nicola Bedlington

Nicola Bedlington is European Patients’ Forum’s Secretary General since September 2014 and was previously the Executive Director since the setting up of the EPF Secretariat in June 2006.

TB: Mrs. Bedlington, can you please tell us what is your position and main occupation?

NB: My name is Nicola Bedlington and I am the Secretary General of the European Patients Forum (EPF), an organisation that works with patients’ groups on public health and health advocacy across Europe uniting the interests of and voice of patients. EPF helps to empower patients’ organiations through educational programmes, policy initiatives and projects. The European Patients Forum works with all the EU Institution and also in close collaboration with other stakeholders in Brussels. My own background is in the disability field at European level, and I have been with EPF since 2006 when I set up the secretariat in Brussels.

OM: Based on what we heard in the session this morning, we would like to hear your opinion on early patient engagement in medicine development.

NB: We are currently co-leading a specific project called PARADIGM , a Public Private Partnership, funded under the Innovative Medicines Initiative. PARADIGM aims to create a framework for meaningful patient engagement in the entire lifecycle of medicines, collaborating with the industry, the regulators, the HTA community and healthcare professionals, patients, and so on. We have three focal points within the project. One of them is prioritization of medicines research, another one is clinical trial design and the third one is the very crucial early dialogue between industries, regulators, the HTA community and patients on looking at the evidence requirements for specific product technologies. This project started only six months ago, and a strong focus has also been on the matrix of patient engagement, concretely why it matters and the difference it can make.

TB: Could you highlight any major challenges for the project so far?

NB: I think that one of the advantages is the good teamwork – we are a thirty-four-member consortium made up of industry, academia, patients’ organisations, NGOs and ethics panels, and the collaborative spirit is really there. One of the challenges is that it is a very short project, it is only thirty months, so we need to achieve a lot in a very short period. Thus, it is crucial that there is an alignment with other organisations working on patient engagement to avoid any duplication. Rather than looking at it from a competitive perspective, it is important to look at the complementarity and synergies, so that we can move forward as effectively as possible and create durable change in mindset and practice.

OM: From a regulatory framework perspective, is there anything that would support you to better advocate for patients and support them in accessing medicines?

NB: I think we could model what has happened within the European Medicines Agency (EMA), which has a very strong patient engagement strategy. So, patients are involved at all levels: on the management board, in the scientific advisory committees. There is an ongoing patients and consumers working party bringing together patient groups and consumer groups, and the Pharmacovigilance Risk Assessment committee (PRAC) has patients fully on board. These are all examples where patient engagement has really been embedded and it would be nice to see similar approaches in other areas, for example the HTA environment.

TB: How can we support patient engagement in the development of healthcare services?

NB: In my opinion, this is really relevant, because it brings us back to the question “Do we ask the right questions?”. Therefore, patients need to be involved in this discussion – they are the ultimate recipients of healthcare services and what the healthcare system stands for. The right approach is therefore to involve them in the dialogue, rather than have them tick boxes. We must involve them in the discussion around what endpoints we are looking at, and what matters for them as patients in terms of outcomes. We need to move from patient reported outcomes, to patient designed and patient relevant outcome measures. We are collaborating with OECD on this issue through their PaRIS initiative.

OM: Is transparency something that is challenging between different countries and bodies in your point of view?

NB: Transparency can be all sort of things to different people. We have developed transparency guidelines with and for our members. The aim of these guidelines is not about policing member organisations, it is about encouraging them. The role of transparency is discussed not only in relation to funding received from industry – it is also about the way of how we do advocacy and consultancy work, the way our governance is structured, the way we communicate and how we undertake projects. So, in short, our entire area of activity. These guidelines have been very well received by our members. Another example of transparency links to clinical trials. During the Clinical Trial Regulation legislative pathway, we did a lot to make sure that there were appropriate references to transparent publication of clinical trials’ results, also in layperson’s terms, even if these trials go wrong. Obviously, transparency in relation to pricing is also a big theme, we have mixed feedback from our members: some of them wish for complete transparency, others prefer to get an idea how prices are actually arrived at. We will be publishing an updated paper on value and pricing where we call for a fair framework to ensure optimal access to valuable innovation by patients across Europe. We need to find that important balance between innovation and solidarity.  

TB: Is there also a need for patient engagement in the area of orphan drugs?

NB: I think there are a lot of unmet needs in the area of rare diseases relating mostly to children. Big efforts are being made to address some of the bottlenecks in the system. EURORDIS is playing a critical role here as the representative voice of patients with rare diseases, and EPF member.  

This intervierw was conducted by Young Gasteiners Theresa Bengough and Oana Motea

“Ministry of Finance needs to be a good listener” – Interview with Corina Pop, former Romanian State Secretary for Health

Corina Pop

Corina Pop (CP) served as Romanian State Secretary for Health from 2015 to October 2018. She coordinated the Project Implementation and Coordination Unit. At the EHFG plenary, she gave her perspective on “making the case for investment in health”. This interview is a follow-up on the heated plenary debate.

NP: During the plenary, you talked about the issue of ‘silo thinking’ and how to better understand the dialogue between health and finance decision-makers. We, as public health professionals, are sometimes in the position of having plans for a health project which we need to pitch to the finance ministry to convince them to allocate a budget for it. We would be interested to hear your take on such situations from the health perspective – how do you approach this challenge?

CP: First of all, I am a doctor, and I am not political. I am rather strictly a doctor in the position of the Ministry of Health. When I arrived at the MoH, one of the most important problems that I faced, and which is of particular interest to me, was that the doctors didn’t want to be involved in the projects. They are not interested in projects because running a project is very difficult. It is not like clinical or surgical medicine, or dentistry. It requires a type of work done by a civil servant. This means that you need to have a team, ideas, and you to spend a lot of time writing mails and talking about money and administration – this is why doctors do not want to be involved. I called everyone I know asking to help me run these projects because we had a reasonable amount of money at our disposal. For me, as a health system policy-maker, it means that you have to find both the resources and the beneficiaries. In order to promote your interests and projects, you need to convince not only the Ministry of Finance, but also the promoters who are the doctors, the managers of the hospitals etc. The promoters are especially interested in research and not in public health-related projects.

For example, I have an important project for Romania that I care about a lot. It is about health economics. As there is no specialist for health economics in Romania, I said ‘look we have to prepare a project: first, we need a curriculum and a methodology, then we need to find the professors, the teachers, the speakers, the experts, and finally we need to train and pilot the first 20-30 doctors or economists’. Even though I have written the guidelines and the programme, no one wants to run the project. And this is not only about the funding, it is also about the interest in public health.

BF: How do you think you could adjust this and make public health a more attractive specialty for doctors in Romania?

CP: It has to be specifically promoted during the undergraduate studies. What we need is for students to start learning about the importance of public health and health of the population as soon as they start studying medicine. It is important to talk about public health when talking about epidemiology in the first year. This way, the students have more options before they go the common way of choosing the surgical specialty which is associated with fame and lots of money. However, no one wants to talk about epidemiology, you know (laughs).

NP: Mr Hetemäki from Finland mentioned the issue of trust being a key factor for collaboration, which can only be based on a common understanding. Now adding that you also have to convince the promoters, how do you actually achieve this? 

CP: There are two dimensions. First, the evidence. Just saying ‘look I have a lot of evidence here, please give me the money’ is not enough to gain trust. Rather, you need to approach it by providing the evidence, i.e. number of saved women’s lives with cervical cancer. It is not like in a Disney cartoon in which you can achieve anything by repeating ‘please trust in me, trust in me’ (laughs). The second dimension is the team that will implement what you promise to do. However, I recently had a case of a very difficult and complex project in which the professionals were simply not able to promise to deliver a certain number of services. That is why the budgeting official said ‘OK, if you are not able to, you will not get the money’. It is very difficult to fight with the Ministry of Finance for trust. It is about the capacity-building and it is about the health workforce. That is why I said, ‘my wish for the Ministry of Finance is to be a good listener’, to have patience to explain that there is so much we can do, and this is not at all because we are unable. It is because health services are too complex. We have to be very patient and listen to the process. It should not be like in a marketplace: ‘how much do you want?’ ‘health spending is this much’, ‘which are the metrics?’, ‘OK, I won’t give any money’. This is impossible.

NP: Are there any tools to support you in convincing them?

CP: Yes, there are two partners you need. One of them is a very good journalist, always capable of presenting the problem. The second is the civil society, especially patient associations. Together with journalists and patient societies/associations, we can convince the Ministry of Finance. Not only with evidence, but with real life examples.

NP: I understand. We frequently hear the financial sustainability of healthcare systems being questioned due to challenges such as the aging population, unhealthy lifestyles and high prices of new medicines and technologies. In your view, what needs to be done to successfully address these challenges?

CP: The problems that require a lot of attention are related to innovation, ageing and costs of healthcare delivery. It should be taken case by case, though. Depending on the country, I can provide you with different answers. Regarding Romania, and the low-income countries, I have told you that it’s always about choosing between either prevention or treatment and diagnosis because all of these fall under the same budget. It is up to you to keep explaining the importance of keeping prevention high, because prevention will decrease the spending in the next 10 years. But the Ministry of Finance does not care about the next 10 years, especially if the elections are in 2 years. At the same time, you have to explain that it is impossible to spend only on prevention, because you have cases of cervical cancer that are happening right now, and need radiotherapy.

The problem is that they are not interested in prevention of lifestyle-associated diseases, because they do not understand the process from smoking and cancer to spending and expenditure. This is the process that we, as specialists, know all too well.

The budgeting officials are interested in taxing alcohol and smoking, but this money does not go to health. It means that you have to explain that we raise the taxes not only to gain more money, but also to prevent people form buying and consuming tobacco products, as well as to use that money to cure the already existing cancer. There needs to be a communication, one needs a lot of time to explain things that seem so trivial for us in public health.

BF: You were mentioning that these things are sometimes hard to explain. Do you think that the direct benefits that the health system has, such as contributing to people having longer lives and healthier lives, are measured enough in the current system? And do we communicate these benefits enough?

CP: Surely it is not communicated enough. And I think that everybody talks about aging, but everybody talks about what problems you have when you are elderly. No one talks about how beautiful it is to have your grandchildren and to be healthy at the same time. It means to explain that good health gives you the gift to be healthy when you are elderly. It means that you are healthy enough to help your family and community. We have to live well and have a high quality of life.

BF: This leads me on to the next question. Public health is actively working on well-being and safety of the entire population. Do you think that the entire health system takes this into account? Sometimes I feel we have a system that is geared around the financial aspect and doesn’t take into account the things which we cannot quantify.

CP: Yes, it’s interesting, we just discussed this one two hours ago. I think that the Sustainable Development Goals address exactly these ‘uncountable’ aspects. If we talk about any of the SDGs, none of them is only about numbers: they talk about quality, well-being, air, nutrition, communicable diseases, safety, patient safety, water, transport… So, yes, it’s exactly about the SDGs.

BF: So you see the SDGs as a useful tool to help you?

CP: Very useful, but they are not promoted enough by the policymakers. They understood they would need to take care about the SDGs, to fulfil the targets, but they don’t really care. If the policymakers were to read, but really read the SDGs, they would understand they are faced with a complete political programme, and a very beneficial one. It is so complete, it is so about people, it’s so social, at the same time addressing health, economy and inequalities.

BF: Is there any way that the SDGs have influenced or inspired you in the way you’re tackling certain health issues in Romania?

CP: Yes, we had a lot of meetings. We had a meeting with Zsuzsanna Jakab in July about SDGs, it was very important for Romania, because she has the power to bring the politicians to the same table.

NP: Who participated, only health policymakers?

CP: No, the president of the country, the directors of the whole university, the rectors of the universities.

BF: Did she help you to get other people on board?

CP: Yes, certainly, she has the power to do that. She’s wonderful in doing something to get all the policymakers on the same table, and without punishing any, she convinced them that was important to work for health.

This interview was conducted by the Young Gasteiners Beatrice Farrugia (BF) and Nataša Peric (NP).

Welcome HEIDI

Mr. Hubel, Coordinator of Healthy Ageing, Disability and Long-term Care

Mr. Hubel, Coordinator of Healthy Ageing, Disability and Long-term Care

Who is Heidi? Heidi is a little girl living in the Swiss mountains with her grandfather and her stories are told in one of the most famous children books but this is not a story about her. It’s about: Health in Europe Information and Data Interface.

On Wednesday the 6th October 2010 DG SANCO gave a workshop at the European Health Forum Gastein introducing HEIDI. The innovative European health information system was presented and sources which will feed into the system introduced. In an interactive discussion, participants could express their expectations and needs, provide feedback and recommendations for a successful system.

Workshop participants engaged in lively discussions on HEIDI.

Workshop participants engaged in lively discussions on HEIDI.

One and half years later, on the 3rd of May 2012 HEIDI was launched, presenting reliable and comparable data on health in the EU. It is a Wiki platform, enabling health experts to write reports and create texts that can be uploaded on the site and later on edited. This can be done individually, if you are registered as an editor, without the help of an administrator, allowing information to be shared and involving the whole health community across Europe.

Information on health status, determinants, systems and policies can be founded on the site and can be organised and searched for by year, country or by region. Searching for keywords or specific topics is also an option or browsing the glossary containing reports from e.g. the EMCDDA, IARC or WHO. As a user you are able to create your own reports by selecting articles and graphs and put them in one single document which can be saved or printed as a pdf, if you wish to have a hardcopy.

HEIDI is an innovative and interactive databank sharing information on the most up to date health context created by experts.

“More access to self-service terminals for all – Digital Agenda”

The elderly, people with disabilities, people who might face difficulties in understanding a language, or reading and those that simply just forgot their reading glasses often face difficulties in everyday life accessing self-service terminals such as public transport ticket vending machines or public information kiosks and cash dispensers.
In order to make the life of this target population more convenient, the APSIS4All project has been funded by the EU to improve the access to those services for people being limited in their capability. In total, 3.41 million Euros are provided by the European Commission to develop personalized interfaces. In September 2011, cash dispensers will be implemented in Barcelona, Spain, while half a year later ticket vending machines will be introduced in Paderborn, Germany. In both cases those innovations are trials which will run for four years.
Is that the beginning of an improved environment and will this defuse into all the countries of the European Union and hopefully beyond?