European Health Data Space – A much needed opportunity for providing the foundation for addressing obesity as an NCD across the EU
On Monday, 10 January 2022, the MEP Interest Group for Obesity and Health System Resilience co-hosted a joint eMeeting with the Obesity Policy Engagement Network (OPEN-EU) -which clearly highlighted the need to take efforts to build Resilience to the next level and enable Obesity data to be meaningfully included following the noncommunicable disease (NCD) framework in the planning, implementation and infrastructure of the upcoming European Health Data Space legislative proposal. Below we highlight the collective thoughts of the meeting. Individual statements and discussions can be viewed in the recording and via Twitter using #EHDS and #ObesityPolicy
Key insights from panel 1: Connecting the Data Dots 2.0
Panellists shared their perspectives as data generators, users and/or consumers, in terms of how they would like obesity to be included in the European Health Data Space. What came out of the discussion was the clear need for:
1. Comprehensive data – in terms of type of data and geographical scope:
- Possibility to link data with other datasets: Have a data framework and processes which allow data on obesity onset, as well as disease progression and health outcomes to be collected which is comparable with other national and international data collection frameworks – such as OECD’s Health at a Glance, the European Commission’s own EU State of Health Report and related European Semester cycles on health and resilience chapters.
- Standardised and regulated data to effectively inform policymakers and accurately shape health policy
2. Data quality, GDPR harmonisation and data flow both within and across borders
Data users as well as generators called for high quality and consistent data collection on obesity beyond prevalence, but rather through the lens of obesity as an NCD in line with the European Commission’s Briefing. This would mean, for instance including collection of data for early diagnosis beyond BMI, and actually taking into account body composition and biomarkers which would then allow meaningful insights for primary as well as secondary use of data including for policy formation. It would also mean following up on the prognosis and the impact on quality of life, what care is received and the related cost. Importantly, what is the cost of not addressing obesity within an NCD framework?
Policymakers do not have to start with a blank sheet. Jennifer Lyn Baker – EASO Executive Committee Member and Epidemiologist with specialisations in obesity and cancer and representing the 20 000 obesity health and research professionals’ community – made a strong case for taking the way in which data on cancer has been structured, collected and harnessed in the framework of National NCD Plans and beyond. Of note to consider for obesity would be Registries and cross border sharing. Examples such as the Nordic Cancer Registries provide a good starting point for inspiration on how those for obesity could be structured and implemented.
For cross border collection and ease of dataflow, EUROSTAT, and OECD can be very useful for economic and statistical data; whereas WHO can be very useful for medical data harmonisation.
3. A common vocabulary and appropriate use by all in their own language
The point was repeatedly made and particularly by Federico Moya the Executive Director of the National Híspalis Bariatric and Obesity Association and Patient Representative for OPEN Spain where 21.6% of adults are living with obesity. A further 39.3% have pre-obesity, meaning more than 60% of the population are affected by pre-obesity or obesity. This number is expected to rise by another 10% across the population by 2030 at a cost of €2000 million euro per annum...
Due to a lack of state-of-the-art data and evidence being available in Spanish (and other non-English languages) there is an engrained systemic bias against treating obesity as the NCD that it is. Instead, policymakers are tasked with designing policy interventions with old knowledge. Policy implementors at national and regional level do not have easy access to knowledge sharing of innovative solutions and people living with obesity are in effect denied care options or even understanding of their needs within the healthcare system by many.
In addition, it was stressed by OECD that one of the main challenges of harmonisation and implementation is that there is consensus on definition and scope of words, phrases, concepts and usage thereof.
4. The inclusion of people living with obesity in all processes concerning data to ensure it benefits them first and foremost.
5. From a policymaker perspective, it is essential to have an EHDS which allows meaningful tracking of the Recovery and Resilience mechanism and the upcoming reversion to the European Semester cycle. Given that obesity is a chronic relapsing disease, it is not acceptable to stop at measuring only prevalence, we need to be able to generate and consult evidence for dossiers such as the Pharma strategy like we can already do so with other major NCDs such as cancer, cardiovascular diseases and diabetes.
How can we expect the Union to reach our competitiveness potential if we are not even able to pose the right questions? We need an EHDS that addresses obesity as a chronic disease along the life course, not least to allow us to make informed policy decisions for the pharmaceutical strategy and ensure that Europeans have access to the best medicines possible and that the Union attracts and retains the best life-science research-based companies.
For policymakers, it is imperative that the EHDS not only provides meaningful data for clinicians, researchers and patients, but for policymakers, it needs to be able to show not only the disparities between countries, but why this is occurring from a clinical and systemic perspective.
Key insights from panel 2: What’s next for Obesity and EHDS at the European Parliament: A Call to Action.
Building on the reflections of the previous session, Dr Kremlin Wickramasinghe from WHO Europe Region reiterated the need to not reinvent the wheel and instead to learn from existing initiatives and data frameworks but to build out as necessary in order to gather meaningful data along the full continuum of obesity as an NCD along the life course. There was a clear call for measured data to be integrated into the Health Surveys and to include within formal patient reported outcomes rather than only “self-reported” health data.
Height and weight measurement is just not enough. WHO encourages the EU institutions to look beyond EU borders for examples of where innovative surveillance systems on obesity along the life course is being successfully implemented.
For example, with the WHO STEPWise project in non-EU Eastern European countries, biomarkers for early diagnosis and monitoring of adult obesity are already in place.
Moving forwards, the WHO sees the EHDS as an opportunity to ensure that data collection frameworks around obesity can not only take a holistic physical environmental approach, but also address access to treatment and long-term management along the life course for people living with obesity. Such a framework would enable meaningful cross border comparisons and in country informed and evidence-driven policy making interventions above and beyond a snapshot of prevalence.
Data saves lives was the very clear message from Birgit Bauer, Digital expert and Patient Advocate as well as member of the TEHDAS Stakeholder Group. She emphasised that as a person living with a chronic disease there is a need for data to inform about the disease itself and therefore to achieve better treatment, care and disease management. The mere fact of having an NCD framework for health data allows patients to access more information about their disease and develop long term treatment and management strategies which may also involve self-management beyond the clinical care they will receive.
Knowing more about one’s disease will benefit our ability to be more resilient as a society because our families, colleagues and employers will all be more knowledgeable about the real disease. In this way, systemic bias’s (including weight stigma and weight bias) can be minimised
Birgit Bauer, MEP Susana Solís Pérez and MEP Pernille Weiss all stated the importance of policymakers transferring knowledge to European Commissioners to shift words to actions.
Next steps
All agreed that this discussion can only be a first step on the way to securing an EHDS which is fit for purpose for the major chronic disease of obesity. As the European Commission draws its drafting of the legislative proposal to a conclusion, we will present the findings of this session within the Commission Services as well as relevant Commissioners as initial inputs.
In particular:
- The MEP Interest group will be requesting a study to be conducted by STOA on the cost and impact of not addressing obesity as an NCD and the key element of the EHDS within such a framework.
- Members of the MEP Interest group will be making a hybrid study trip in February to investigate good and interesting practices which could be included as part of National Plan frameworks in the EU and will be submitting their findings to National governments as well as the European Commission as part of the Healthier Together Initiative of the European Commission.
Useful resources
- OPEN-EU policy stakeholder views on EHDS
- Obesity Hard Facts (EASO Infographic)
- Obesity prevention | Knowledge for policy (europa.eu) (European Commission’s Brief categorising obesity as a Chronic Disease published 4 March 2021)
- European Research Agenda: What’s Missing For Obesity – EASO
- Childhood Obesity Surveillance Initiative (COSI) Factsheet from WHO
- Health at a Glance 2021: OECD Indicators | Health at a Glance | OECD iLibrary (oecd-ilibrary.org)
- STEPwise Approach to NCD Risk Factor Surveillance (STEPS) (who.int)
- What is DataSavesLives — Data Saves Lives
Speaker List
Pernille Weiss MEP Co-chair
Susana Solis-Perez MEP Co-chair
Dr Jennifer Lyn Baker European Association Study Obesity (EASO)
Birgit Bauer Patient Expert and Person Living with Multiple Sclerosis
Michele Cecchini Public Health Lead OECD
Fede Luis Moya Patient Representative Asociación Bariatrica Híspalis
Dr Kremlin Wickramasinghe WHO Europe Representative
Programme
Speakers:
- Michele Cecchini – Public Health Lead OECD
- Dr Jennifer Lyn Baker – European Association for the Study of Obesity
- Federico Luis Moya – Patient Representative
- MEP Pernille Weiss
- European Commission Representative TBC
- Kremlin Wickramasinghe - WHO Europe Region Representative
- Birgit Bauer - Patient Expert and Person Living with Multiple Sclerosis
- MEP Susana Solis Perez
Speaker Biographies
MEP Pernille Weiss
MEP Pernille Weiss is a politician from the Conservative People’s Party of Denmark and a member of the European People’s Party, (EPP). Pernille holds a seat in the Industry, Research & Energy Committee (ITRE) and is a substitute in the Committee on the Environment, Public Health and Food Safety (ENVI).
She is also the chief executive officer (CEO) of a healthcare and architectural consultancy and serves as a board member to the business association of the European People’s Party (SME Europe) since 2019.
Ms Weiss is a qualified nurse who later went on to specialise in forensic nursing. She holds two master’s degrees: one in Health from the University of South Denmark and one in Leadership and Innovation from Copenhagen Business School.
Susana Solís Perez
Susana Solís Perez is a Spanish politician for Ciudadanos, part of the Renew Europe group. She has been a member of Parliament since May 2019.
She is a member of the Committee on Regional Development (REGI) and the Special Committee on Artificial Intelligence (AIDA). She also holds a seat as a substitute in the Committee on the Environment, Public Health and Food Safety (ENVI) as well as in the Women’s Rights and Gender Equality Committee (FEMM). In addition to her committee assignments, Pérez is also a member in the MEPs Against Cancer group.
Ms Perez is passionate about promoting a more innovative and smarter Europe. Before being an MEP, she worked in the private sector, for companies such as Mercedes, Benz, Johnson & Johnson and Robert Bosch.
She holds a master’s degree in European Mechanical Engineering from the Fachhochschule de Osnabrück (Germany), an MBA and a master’s degree in Marketing Management from IE Business School (Madrid). She also holds a master’s degree in Public Administration and Leadership from IESE (Madrid).
Dr. Jennifer L. Baker
Dr. Jennifer L. Baker is an Associate Professor in the department of The Novo Nordisk Foundation Center for Basic Metabolic Research, The Faculty of Health and Medical Sciences, at the University of Copenhagen in Denmark. She is also affiliated with the Institute of Preventive Medicine in Frederiksberg, Denmark.
The focus of her research program is on the causes and the short- and long-term consequences of body size and growth in childhood, with a particular emphasis on childhood obesity. Her studies have been conducted in Denmark, the United States and several other Nordic countries.
Birgit Bauer
Birgit Bauer, Social Media & Digital Health Expert, Journalist, Speaker and Analyst and Patient Expert
Birgit is German and works with a Business Partner in the company, the Manufaktur für Antworten UG (www.manufaktur-fuer-antworten.de) . Birgit works as Social Media and Digital Health Expert, Journalist and Speaker with a more than 16 years’ experience and a specialisation in Healthcare, developing Workshops and Talks about the use of Social Media for Target Groups e.g. Patients, Patient Organisation, NPO, Industry and BioTech Companies, Start-Ups and governmental institutions. In her role as Consultant, she designs and realize Social Media – and Communication Strategies for different Businesses or Patient Projects and brings the Ideas and Strategies into the reality. With a team Birgit also designs and performs Feasibility Studies.
Birgit aka @Birgitpower on Twitter (https://twitter.com/Birgitpower) is one of the most influential Blogger about Multiple Sclerosis and Healthcare in Germany and Europe. She started her Blog “Fast normal! Mein Leben mit MS” – “Almost normal – My Life with MS” http://leben-arbeiten-mit-multiple-sklerose.blogspot.de/ in 2007.
Birgit is a so-called Patient Expert and Eupati Fellow. She supports the European Multiple Sclerosis Platform voluntary, is a proud member of the Editorial Board of the “Data Saves Lives” Initiative, is HIMSSFuture50 Patient Leader 2021 and Member of the Stakeholder Group of the Tehdas Project. Birgit is also involved in different Advisory Boards, Committees and Focus Groups. She is a Co-Author of different scientific Whitepapers and Publications around the theme “Patient – Doctor Communication”.
Michele Cecchini
Michele Cecchini leads work on Public Health at the OECD – the Organisation for Economic Co-operation and Development. Michele’s research interests include priority setting and programme evaluation of policies influencing population health.
He is the editor and co-author of publications on the economic aspects of public health, including the recent OECD flagship publications on the heavy burden of obesity and on tackling harmful alcohol use and antimicrobial resistance.
Michele holds a position of adjunct professor in applied health economics at the School of Public Health of the University of Siena and held a visiting position at the Duke-NUS Graduate Medical School in Singapore. He served as temporary advisor to a number of government and international agencies, including WHO, IARC, the EC and the World Bank. Michele is a medical doctor specialized in public health and holds a master’s degree from the London School of Economics and the London School of Hygiene and Tropical Medicine and a PhD from Imperial College London.
Dr Kremlin Wickramasinghe MBBS, MSc, PhD
WHO Europe Region Representative
Kremlin is the Acting Programme Manager Nutrition, Physical Activity and Obesity in the WHO European Region. He works at the WHO European Office for the Prevention and Control of Noncommunicable Diseases based in Moscow which is an integral part of the Division of Country Health Programmes, WHO Regional Office for Europe. His Programme is responsible for providing support to the 53 Member States of the WHO European Region on the implementation of the European Food and Nutrition Action Plan & the Physical Activity Strategy for the WHO European Region 2016-2025, as well as monitoring the implementation process.
Prior to this position he worked as a technical officer on Noncommunicable Diseases (NCD) Risk Factors, since 2017 in the same office. Before joining WHO, he was the co-director of the WHO Collaborating Centre on Population Approaches to NCD Prevention at the University of Oxford, United Kingdom. He co-edited the text book “An Introduction to Population-level Prevention of Non-Communicable Diseases” published by the Oxford University Press.
He has a special interest in multisectoral responses to health promotion, quantifying the outcome of health policies and implementation research. Kremlin graduated as a medical doctor with MBBS from the University of Colombo. He holds an MSc in Global Health Science and a DPhil (PhD) in Public Health from the University of Oxford.
Federico Luis Moya
Patient Representative Asociación Bariatrica Híspalis
I was born in a small city in Spain called Santander in 1983. During my first 12 years, I lived a happy childhood.
After four years of practicing high-performance swimming and not qualifying for a national championship in 1995, disappointment led me to quit. At that time, my diet was high in calories, and once physical activity had been abandoned, no one advised modifying my caloric intake, which led gain a high amount of weight. It was impossible to maintain a healthy diet, and the only thing I achieved was to increase my weight.
After 20 years, in 2014, one morning, while getting dressed to go to work, I had to wake up my father to put my shoes on. My size prevented me from bending over to tie my shoelaces! At that point, I decided to seek help from a healthcare professional.
After a year of traveling through health centers, I managed an appointment with a doctor that understood obesity and its importance as a chronic disease. Thanks to him, I understood that my problem was not a will-mather but a disease that needed medical attention.
The following action plan was proposed to me: To reduce my weight. The next step was an operation.
Success story: After eight years of daily cognitive work, I have maintained a body mass index that does not generate comorbidities associated with my chronic disease.
Nací en una pequeña ciudad de España llamada Santander en 1983. Durante mis primeros 12 años, viví una infancia feliz.
Después de cuatro años de practicar natación de alto rendimiento y no calificar para un campeonato nacional en 1995, la decepción me llevó a renunciar. En ese momento, mi dieta era alta en calorías, y una vez que se había abandonado la actividad física, nadie me aconsejó modificar mi ingesta calórica, lo que llevó a ganar una gran cantidad de peso. Era imposible mantener una dieta saludable, y lo único que conseguí fue aumentar de peso.
Después de 20 años, en 2014, una mañana, mientras me vestía para ir a trabajar, tuve que despertar a mi padre para ponerme los zapatos. ¡Mi talla me impedía agacharme para atarme los cordones de los zapatos! En ese momento, decidí buscar ayuda de un profesional de la salud.
Después de un año de viajar por los centros de salud, logré una cita con un médico que entendía la obesidad y su importancia como enfermedad crónica. Gracias a él, entendí que mi problema no era un matemático de voluntad, sino una enfermedad que necesitaba atención médica.
Se me propuso el siguiente plan de acción: Reducir mi peso. El siguiente paso fue una operación.
Caso de éxito: Después de ocho años de trabajo cognitivo diario, he mantenido un índice de masa corporal que no genera comorbilidades asociadas a mi enfermedad crónica.