Health literacy is more than smashing the glass wall between patients and health professionals

Kristine Sørensen, Founder of the Global Health Literacy Academy, presented her latest study during the EHFG 2019 session “Mind the citizen – how health literacy can disrupt cancer care”, organised by the Health Literacy Coalition. Focusing her research in Europe, Kristine analysed 31 national cancer control plans – only five had included health literacy as a priority.

Having a strong interest in her work at the Global Health Literacy Academy we wanted to learn more about the disruptive power of health literacy and its potential to improve health equity and social inclusion.

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Data for safer care: Digital solutions and surveillance systems for patient safety (W3)

“The more we look, the more we find!”

The workshop organized by Health First Europe and European Network for Safer Healthcare (sponsored by Becton, Dickinson and Company) on the first day of the EHFG was an interactive and inspiring discussion between both the panelist and the audience. Data collection on adverse events and surveillance is needed to foster patient safety and tackle the 8.8 million cases of Healthcare Associated Infections (HAIs) in the EU, along with the threat posed by Antimicrobial Resistance (AMR).

Andrea Ammon, Director of the European Center for Disease Prevention and Control (ECDC), in her keynote speech, addressed the 2016/2017 situation of HAI prevalence in different countries in Europe. She emphasized the observed correlation between the blood culture use rate and HAI prevalence: “The more you look, the more you find”. The number and frequency of blood cultures, case mix severity and specificity of PPS staff (Point Prevalence Survey) can explain even up to 85% of the inter-country variation of HAI%!

For me this was a real eye-opener, making all of us ask the same question: if you take less frequent blood cultures, and in return,your results show you have lower HAI%, does that mean your country is doing worse or just looking better? What does this mean for the future of surveillance? What are the factors we need to tackle in order to have comparable data between countries? It seems digital solutions and a pan-European methodology set in place could provide the answer to the very important question of having comparable data in Europe as a whole. Benchmarking between different countries, regions and even hospitals, can drive improvements in HAI monitoring and prevention. It can lead to new prevention methods and significantly improve patient safety.

A takeaway thought of this workshop for me was that we need to involve the patient more in the development of healthcare system quality, including surveillance and patient safety. The patient in the center of the system, a system that exists for the patient and their needs, not vice versa. This combined holistic and multisectoral approach seems to be the best way to ensure that changes for the better are made. In addition, the healthcare system needs to collect, interpret and make transparent data publicly available on standards and quality of given healthcare, based on a predetermined and universal set of indicators to make benchmarking possible. I believe health literacy and empowering the patient to use this publicly available transparent data on different service providers in the healthcare system can lead to service-wise more competitive environment in the whole sector and secure the much-needed atmosphere of growth and innovation.

This Blog was written by the Young Gasteiner Vladana Stefanovic

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

Prescribing physical activity as an alternative way of treating physical and mental health problems: interview with Marita Friberg

To support EU Member States in reaching the Sustainable Developmental Goals, the European Commission has established the new expert group “Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases”. The Group sets Public Health priorities and coordinates implementation of evidence-based best practice interventions in other countries. We conducted an interview with Marita Friberg from the Public Health Agency of Sweden, who presented a best practice example on prescribing physical activity for physical and mental health problems, which planned to be implemented in 10 other member states.

PB: Thank you, Marita, for agreeing to participate in this interview. Could you please give us a short summary of your best practice example on prescribing physical activity? How did your project become part the best practice examples?

MF: Our project was suggested by the Steering Group as a best practice example. We developed a method in Sweden (prescribing physical activity), which has been scientifically evaluated and is proven to be as good as medical treatment (to address physical and mental health problems). Prescribing physical activity is used in healthcare, and follows the medical treatment process: the prescriber has to be registered, the process has to be followed-up and documented in a systematic way. The prescriber could be a doctor, a nurse or a physiotherapist. These are the key figures of the method. The evidence-based handbook presents prescriptions for different diagnoses. The treatment is individualised, happening in a dialog with the patient and based on each person’s capacity and motivation.

GB: What can you do if people do not want or cannot afford to buy a membership for a sports facility?

MF: The recommendations in the guidebook only indicate the dosage, not a particular activity. For example, strength-training three times a week or aerobic training four times a week. Then, in dialog with the patient, we discuss what is most convenient, and we try to find the physical activity which suits the person the best. The dialogue is central and essential to the implementation of the best practice. If the cost for gym is too expensive, then you can find other options, such as using your own bodyweight or working out at home. We talk about how you can integrate physical activity in your everyday life. For example, if you are going to your workplace or visit friends, walking, getting off the bus earlier or cycling, all of those would be an option to increase physical activity. Or taking the stairs instead of the elevator. The majority of patients receive prescribed walking. It is not about the exercise itself, it is about physical activity.

PB: …but what if I don’t want to do it alone?

MF: Then the healthcare can inform you of physical activity providers and groups in your area. In some regions, there are even health coaches. If you visit your doctor, she/he can recommend you talk with a health coach, who is usually a trainer or physiotherapist, and the coach can help you further.

PB: In Belgium, GPs have more or less 15 minutes to see a patient. How can this dialogue fit in such a short timeframe?

This is also a problem in most of the countries we have been talking to, because only the doctors are allowed to prescribe. In Sweden, we are using special trained nurses, because doctors often have limited time for a dialogue.  It is cost-effective to use nurses. However, it is important to have doctors on board because they meet the patient and they can suggest the patient to talk to the nurses. Doctors can be the door openers, but they do not have to be the person who has the dialog with the patients.

GB: What is your experience about working with people from lower socioeconomic background? Studies show a social gradient in physical activity.

MF: This is an important issue we have to work on. Also, the adherence to the prescription. We are struggling in Sweden, because prescription for physical activity is an offer that patients can accept or decline. This group more often declines the prescription for physical activity and prefers taking medication. We have to include them somehow, otherwise only those who are motivated will participate in our project. This will increase the inequality gap. So, this it is a future lesson to learn, how can we work with these vulnerable groups.

PB: What do you think would be the struggle to share and implement this project in other countries? The healthcare systems might be completely different.

MF: That is why we need a feasibility study at the beginning of the project. We try to be realistic: it is not going to be implemented on national level. We start small. We will work with actual health professionals on local level, who talk to patients and who want to implement our project. Parallel on the structural level, we need to raise awareness in stakeholder workshops, and show how our method could be integrated in the health care system.

PB: What should be the role of the Steering Group on Prevention and Promotion?

MF: I think the Steering Group has started this project, as they see how important it is. We have 10 participating member states at the moment and about 5-6, who want to join. But, we have a limited budget and limited time. We can start the European implementation in this first project, but the Steering Group has to acknowledge that it will need further support, as you are not going to solve this problem with a three years project. While we start with these 10 participating countries, other countries might see the benefits and would like to join. It is important that we can introduce this method to them as well.

PB and GB: Thank you for your time. We really look forward at seeing how this project will be implemented.

This interview was conducted by Young Gasteiners Petronille Bogaert and Gerg? Baranyi

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