Declaration on Sharing Health Data and
Using AI for Healthy Longevity
Eurosymposium on Healthy Ageing
Meeting in Brussels and Online. November 22 and 23, 2024.
Introduction
The rapid advance of artificial intelligence (AI) has captured global attention, presenting both opportunities and risks. While these risks are undeniable, they can be mitigated if we prioritize the application of AI for the greater good, specifically in fostering healthy human resilience and longevity.
One crucial enabler for this vision is the sharing of health data for medical research, which is advancing under initiatives like the European Health Data Space (EHDS). However, the pace of progress is widely regarded as insufficient. Our collective ambition is to align with organizations and individuals committed to accelerating the responsible and effective health data sharing.
Key Considerations
Proposals for Action
Empowering Patients and Data Accessibility
Conclusion
Since the beginning of the history of medicine, healthcare has been delivered through collective knowledge and individual experiences, despite often inaccurate beliefs and knowledge of the patient's condition. It is only relatively recently that patient data have become an important part of the field of knowledge, not only for the treatment of individuals themselves, but also for medical research.
One day, it could become self-evident that data useful for the right to health are a common good that we have to share with scientists.
One day, medical and research data on health and longevity could be accessible for all, so that research findings will enable citizens to live longer, more supportive and healthier lives.
May that day arrive as soon as possible!
The rapid advance of artificial intelligence (AI) has captured global attention, presenting both opportunities and risks. While these risks are undeniable, they can be mitigated if we prioritize the application of AI for the greater good, specifically in fostering healthy human resilience and longevity.
One crucial enabler for this vision is the sharing of health data for medical research, which is advancing under initiatives like the European Health Data Space (EHDS). However, the pace of progress is widely regarded as insufficient. Our collective ambition is to align with organizations and individuals committed to accelerating the responsible and effective health data sharing.
Key Considerations
- Availability of Health Data in the European Union
- The majority of health data in the EU is already available online, creating a foundation for transformative research.
- Progress of the European Health Data Space
- The EHDS represents a significant step forward but is moving too slowly to address urgent medical research and longevity needs.
Proposals for Action
Empowering Patients and Data Accessibility
- Guarantee full portability and availability of all health data for patients, including their explicit right to share it for scientific purposes.
- Foster interoperability of data across all health and research domains, extending beyond classical medical records to encompass all digital health products.
- Enable broad consent and facilitate citizen / patient driven data sharing .
- Ensure FAIR (findability, accessibility, interoperability, and reusability) data.
- Employ robust techniques for anonymization and pseudonymization to uphold patient privacy whilst advancing research.
- Encourage the establishment of altruistic databases where data is voluntarily shared for the common good.
- Use AI for curation, analysis, and management of large-scale health data to improve efficiency and accuracy.
- Establish a single point of contact (SPOC) in each EU country for scientists seeking to share or access health data.
- Removing Bureaucratic Barriers
- Simplify administrative processes to enable companies and public organizations to focus on developing treatments for aging and age-related diseases.
- Commitment to Knowledge Sharing
- Mandate that research funded with public money produces results that are openly accessible. Both negative and positive results, as well as pre-registered research plans, should be publicly available.
- Once data is analyzed through AI, the development of genuine rejuvenation biotechnologies could occur through:
- Virtual trials on digital twins of animals and humans.
- Trials in vitro and on-a-chip
- Blind trials on old mice or rats
- Double-blind trials on well-informed elderly volunteers for real-world application.
Conclusion
Since the beginning of the history of medicine, healthcare has been delivered through collective knowledge and individual experiences, despite often inaccurate beliefs and knowledge of the patient's condition. It is only relatively recently that patient data have become an important part of the field of knowledge, not only for the treatment of individuals themselves, but also for medical research.
One day, it could become self-evident that data useful for the right to health are a common good that we have to share with scientists.
One day, medical and research data on health and longevity could be accessible for all, so that research findings will enable citizens to live longer, more supportive and healthier lives.
May that day arrive as soon as possible!
Eurosymposium on Healthy Ageing
Second Brussels Declaration for Radical Healthspan Extension: After Covid times,
Rejuvenation times.
November 2022 - we invite you to sign it if you agree with these aims
La version française ci-dessous. French version below
Versión en español abajo. Spanish version below
En
Medical, scientific and technological progress is stronger than ever, but this has not been enough to improve healthy life expectancy. In 2020 and 2021, we had the first decrease in life expectancy at the world level in the last 75 years. To overcome this loss in life expectancy, we need better scientific cooperation, increased research, and higher government-level commitment to progress.
The defeat of aging lies within our collective grasp. It’s time to seize this remarkable opportunity.
We proclaim the possibility and imperative of a moonshot project to overcome all age-related diseases within 25 years by tackling aging as their root cause.
The result will be a world where:
Key steps in this initiative will include:
Fr
Les progrès médicaux, scientifiques et technologiques sont plus forts que jamais, mais cela n'a pas été suffisant pour améliorer l'espérance de vie en bonne santé. En 2020 et 2021, nous avons connu la première baisse de l'espérance de vie au niveau mondial depuis 75 ans. Pour surmonter cette perte d'espérance de vie, nous avons besoin d'une meilleure coopération scientifique, d'une recherche accrue et d'un engagement plus fort des gouvernements en faveur du progrès.
La défaite du vieillissement est à notre portée collective. Il est temps de saisir cette remarquable opportunité.
Nous proclamons la possibilité et l'impératif d'un projet "moonshot" visant à vaincre toutes les maladies liées à l'âge d'ici 25 ans en s'attaquant au vieillissement en tant que cause première.
Le résultat sera un monde où :
Les étapes clés de cette initiative seront les suivantes
Ces programmes nécessiteront un effort coordonné au niveau national et international, intégrant diverses approches de recherche existantes et nouvelles. Ils devront être financés par des organismes publics et privés, et créer des solutions inclusives et abordables, accessibles à tous dans les mêmes conditions.
Es
El progreso médico, científico y tecnológico es hoy día más intenso que nunca, pero no ha sido suficiente para mejorar la esperanza de vida saludable. En 2020 y 2021, tuvimos la primera disminución de la esperanza de vida a nivel mundial en los últimos 75 años. Para superar esta pérdida de esperanza de vida, necesitamos una mejor cooperación científica, más investigación y un mayor compromiso de los gobiernos con el progreso.
La derrota del envejecimiento está a nuestro alcance colectivo. Es hora de aprovechar esta extraordinaria oportunidad.
Proclamamos la posibilidad y el imperativo de un proyecto "moonshot" para vencer todas las enfermedades relacionadas con la edad en un plazo de 25 años abordando el envejecimiento como su causa fundamental.
El resultado será un mundo en el que:
Los pasos clave de esta iniciativa incluirán:
Estos programas requerirán un esfuerzo coordinado a escala nacional e internacional, que integre diversos enfoques de investigación existentes y novedosos. Deben ser financiados tanto por organizaciones públicas como privadas, y crear soluciones inclusivas y asequibles, disponibles en igualdad de condiciones para todo el mundo.
__________________________________________________________________________________
If you find the vision outlined in this text a worthwhile one, we would like to invite you to 'sign' it by sending an email to [email protected] If you wish to, please also add your profession or the nature of your interest in healthy longevity (such as: medical doctor, biogerontologist, longevity activist, biotech entrepreneur, writer etc), and the country where you live.
Versión en español abajo. Spanish version below
En
Medical, scientific and technological progress is stronger than ever, but this has not been enough to improve healthy life expectancy. In 2020 and 2021, we had the first decrease in life expectancy at the world level in the last 75 years. To overcome this loss in life expectancy, we need better scientific cooperation, increased research, and higher government-level commitment to progress.
The defeat of aging lies within our collective grasp. It’s time to seize this remarkable opportunity.
We proclaim the possibility and imperative of a moonshot project to overcome all age-related diseases within 25 years by tackling aging as their root cause.
The result will be a world where:
- Healthcare is far less expensive
- Human well-being is radically extended
- The elderly will no longer be, or be seen as a burden but as an asset to society
- People place greater value on the environment and on peace, in view of their expectation of much longer lives
- The right to life is more precious than ever, because healthy life is longer
- Humanity is more unified in the common struggle to defeat aging
Key steps in this initiative will include:
- A paradigm shift stressing the need for research on aging itself, rather than only on resultant diseases of old age.
- The removal of regulatory and other barriers which prevent or disincentivize companies from development of treatments for aging.
- Using Artificial Intelligence and Big Data as much as possible for Healthy Longevity. AI has its own risks and privacy is important, but using AI to constantly seek improvement of health and longevity is a safer way to progress. We will then use data for common good and to have "friendly and healthy" AI companions.
- Sharing knowledge for healthy longevity as much as possible. Where public money and data made with public means is used, results should always be public.
- Results of research (negative or positive) should always be public, and research plans should be pre-registered. Patents may protect privacy rights, but must not slow down research.
- An accelerated program to test interventions, especially on old animals and well-informed old people on a much larger scale than anything that exists at the moment. This will lead to genuine rejuvenation biotechnologies.
Fr
Les progrès médicaux, scientifiques et technologiques sont plus forts que jamais, mais cela n'a pas été suffisant pour améliorer l'espérance de vie en bonne santé. En 2020 et 2021, nous avons connu la première baisse de l'espérance de vie au niveau mondial depuis 75 ans. Pour surmonter cette perte d'espérance de vie, nous avons besoin d'une meilleure coopération scientifique, d'une recherche accrue et d'un engagement plus fort des gouvernements en faveur du progrès.
La défaite du vieillissement est à notre portée collective. Il est temps de saisir cette remarquable opportunité.
Nous proclamons la possibilité et l'impératif d'un projet "moonshot" visant à vaincre toutes les maladies liées à l'âge d'ici 25 ans en s'attaquant au vieillissement en tant que cause première.
Le résultat sera un monde où :
- Les soins de santé sont beaucoup moins coûteux
- Le bien-être humain est radicalement étendu
- Les personnes âgées ne seront plus, et ne seront plus considérées comme un fardeau mais comme un atout pour la société
- Les citoyens accordent plus de valeur à l'environnement et à la paix, étant donné qu'ils s'attendent à vivre beaucoup plus longtemps.
- Le droit à la vie est plus précieux que jamais, car la vie en bonne santé est plus longue.
- L'humanité est plus unie dans la lutte commune pour vaincre le vieillissement.
Les étapes clés de cette initiative seront les suivantes
- Un changement de paradigme soulignant la nécessité de la recherche sur le vieillissement lui-même, plutôt que sur les seules maladies résultant de la vieillesse.
- La suppression des obstacles réglementaires et autres qui empêchent ou dissuadent les entreprises de développer des traitements contre le vieillissement.
- Utiliser autant que possible l'intelligence artificielle et le big data pour une longévité saine. L'IA a ses propres risques et le respect de la vie privée est important, mais utiliser l'IA pour rechercher constamment l'amélioration de la santé et de la longévité est une façon plus sûre de progresser. Nous utiliserons alors les données pour le bien commun et pour avoir des compagnons IA "amicaux et sains".
- Partager autant que possible les connaissances pour une longévité en bonne santé. Lorsque l'argent public et les données obtenues avec des moyens publics sont utilisés, les résultats doivent toujours être publics.
- Les résultats de la recherche (négatifs ou positifs) devraient toujours être publics, et les plans de recherche devraient être enregistrés au préalable. Les brevets peuvent protéger le droit à la vie privée, mais ne doivent pas ralentir la recherche.
- Un programme accéléré pour tester les interventions, notamment sur de vieux animaux et des personnes âgées bien informées, à une échelle beaucoup plus grande que tout ce qui existe actuellement. Cela conduira à de véritables biotechnologies de rajeunissement.
Ces programmes nécessiteront un effort coordonné au niveau national et international, intégrant diverses approches de recherche existantes et nouvelles. Ils devront être financés par des organismes publics et privés, et créer des solutions inclusives et abordables, accessibles à tous dans les mêmes conditions.
Es
El progreso médico, científico y tecnológico es hoy día más intenso que nunca, pero no ha sido suficiente para mejorar la esperanza de vida saludable. En 2020 y 2021, tuvimos la primera disminución de la esperanza de vida a nivel mundial en los últimos 75 años. Para superar esta pérdida de esperanza de vida, necesitamos una mejor cooperación científica, más investigación y un mayor compromiso de los gobiernos con el progreso.
La derrota del envejecimiento está a nuestro alcance colectivo. Es hora de aprovechar esta extraordinaria oportunidad.
Proclamamos la posibilidad y el imperativo de un proyecto "moonshot" para vencer todas las enfermedades relacionadas con la edad en un plazo de 25 años abordando el envejecimiento como su causa fundamental.
El resultado será un mundo en el que:
- la asistencia sanitaria será mucho menos costosa
- el bienestar humano se ampliará radicalmente
- las personas mayores ya no serán ni serán vistas como una carga, sino como un activo para la sociedad
- la gente valorará más el medio ambiente y la paz, ante la expectativa de una vida mucho más larga
- el derecho a la vida será más valioso que nunca, porque la vida sana será más larga.
- la humanidad estará más unida en la lucha común contra el envejecimiento
Los pasos clave de esta iniciativa incluirán:
- Un cambio de paradigma que haga hincapié en la necesidad de investigar sobre el propio envejecimiento, en lugar de sólo sobre las enfermedades resultantes de la vejez.
- La eliminación de barreras regulatorias y de otro tipo que impiden o desincentivan a las empresas a desarrollar tratamientos para el envejecimiento.
- Utilizar en la medida de lo posible la Inteligencia Artificial y el Big Data para una Longevidad Saludable. La IA tiene sus propios riesgos y la privacidad es importante, pero utilizarla para buscar constantemente la mejora de la salud y la longevidad es una forma más segura de progresar. Así utilizaremos los datos para el bien común y para tener compañeros de IA "amistosos y saludables".
- Compartir los conocimientos para una longevidad saludable en la medida de lo posible. Cuando se utilice dinero público y los datos sean obtenidos con medios públicos, los resultados deben ser siempre públicos.
- Los resultados de la investigación (negativos o positivos) deben ser siempre públicos, y los planes de investigación deben registrarse previamente. Las patentes pueden proteger el derecho a la intimidad, pero no deben frenar la investigación.
- Un programa acelerado para probar las intervenciones, especialmente en animales viejos y ancianos bien informados, a una escala mucho mayor que la que existe actualmente. Esto conducirá a auténticas biotecnologías de rejuvenecimiento.
Estos programas requerirán un esfuerzo coordinado a escala nacional e internacional, que integre diversos enfoques de investigación existentes y novedosos. Deben ser financiados tanto por organizaciones públicas como privadas, y crear soluciones inclusivas y asequibles, disponibles en igualdad de condiciones para todo el mundo.
__________________________________________________________________________________
If you find the vision outlined in this text a worthwhile one, we would like to invite you to 'sign' it by sending an email to [email protected] If you wish to, please also add your profession or the nature of your interest in healthy longevity (such as: medical doctor, biogerontologist, longevity activist, biotech entrepreneur, writer etc), and the country where you live.
Heales
Heales vzw (http://heales.org/, Healthy Life Extension Society) is a European non-governmental association promoting and advocating scientific research into longevity and biogerontology. We are a group of biologists, biochemists, medical doctors and diverse other professionals throughout Europe.
Contact
Conference organizing team
Didier Coeurnelle
Ilia Stambler
Shivani Kumar
Ilia Stambler
Shivani Kumar
.
