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H2O fosters debate on value-based, outcome driven healthcare in DIA Europe 21

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By Nick Carney, F.Hoffmann-La Roche 

A recent panel discussion at the DIA Europe 2021 virtual congress chaired by Meni Styliadou (Takeda, H2O Project Leader) titled „Laying the foundation for a value-based, patient-centered, and outcome-driven healthcare system in Europe“ provided the opportunity to present the vision of IMI H2O and discuss in project the context of these healthcare system themes.

Professor Tanja Stamm (Medical University Wein, H2O Project Coordinator) represented the IMI H2O project, alongside Birgit Bauer – a digital health and social media expert and patient expert, person and editorial board member of Data Saves Lives who lives with Multiple Sclerosis, and Professor Christoph A. Meier – a pioneering clinician who brought value-based healthcare to Switzerland through implementation of PRO measurement programmes during his tenure as Chief Medical Officer at the Universitätsspital Basel. 

The panel presented an opportunity to engage broadly on H2O and spread the good word about our work.  Already in the planning stages H2O captured the imagination of the other panelists – paving the way for potential future collaboration!

After Meni set the scene, and teed up the conversation to tackle „how we can unblock“ the transition to value-based healthcare, a lively and collaborative discussion followed that wove together the perspectives and expert view points from across healthcare, and touched themes central to H2O including health outcome measurement, patient engagement and empowerment, data governance and policy, and multi-stakeholder partnership. 

While the uphill struggle in battling the lack of incentives for change and to measure patient-reported outcomes was highlighted by Christoph, we also heard clearly from Birgit that patients are willing to be data donors, but that we must work in close partnership to convey the value of outcomes measurement through provision of data feedback, and by  ensuring we both „ask the right questions at the right time“, and that patients are „the owners of their own data“.  

This provided the perfect foundation for Tanja to elaborate on the vision of H2O and how we hope to surmount some of these challenges – in particular through establishing the legal, ethical, and governance frameworks that enable patients to be guardians on their own health data, but also by setting the standards for measurement, data interoperability and outcomes transparency to „build trust in health data as a natural resource“ for society.  It was emphasised that the infrastructure for outcomes capture and feedback to patients we aim to build in H2O will empower and engage patients.  Ultimately ensuring that their care focusses on what truly matters to them – and we hope will scale the work of innovators like Christoph to a pan-European level and beyond!

Meni wrapped up proceedings on a beautiful note, by asking each of the panelists to share one wish they would send in a letter to Professor Elizabeth Teisberg, who co-created the value-based healthcare concept back in 2006, that would turn the theory into reality.  We hope through making H2O a success we can show Elizabeth some of her foundational principles in action and invite her into conversation with us too!

Nick Carney, PhD is Associate Global Scientific Director – Clinical Decision and Health Outcomes at F.Hoffmann-La Roche and member of H2O. 

Universitätsspital Zürich , USZ: https://new.usz.ch/fachbereich/innere-medizin/team/

Data Saves Lives: https://datasaveslives.eu

Birgit Bauer: https://www.linkedin.com/in/birgitbauermanufaktur/

https://twitter.com/Birgitpower

26th März 2021/von Felix Fischer
http://health-outcome-observatory.de/wp-content/uploads/2021/03/DIA-Europe-1.png 600 900 Felix Fischer http://health-outcome-observatory.de/wp-content/uploads/2021/01/H2O-logo-hor-300x98.png Felix Fischer2021-03-26 08:56:232021-03-26 10:47:37H2O fosters debate on value-based, outcome driven healthcare in DIA Europe 21

H2O gets ready to embrace patients‘ views through the Advisory Boards

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The Health Outcomes Observatory (H2O) project kicked off on 1 October 2020 with the aim to equip patients with the tools to measure their outcomes in a standardised way, whilst giving them full control of their data. This is the first-ever attempt at scale to collect and incorporate patient outcomes into healthcare decision making at an individual and population level.

And it has significant value for patients. Often, the way diseases are measured is largely based on input from clinicians; because of this, the measurements don’t necessarily include experiences from the patient and the impact of a disease on their life. By creating a framework that incorporates and amplifies the patient voice, H2O hopes to improve the dialogue between patients and doctors, so that patients receive better care, healthcare professionals have better access to data to inform clinical decisions, and ultimately, improve the quality and sustainability of care based on outcomes that truly matter to patients.

To achieve this, the European Patients’ Forum, a consortium partner of H2O, will contribute with a strong patient perspective by establishing and coordinating three project patient advisory boards. The patient boards will be made up of patients and patient representatives that consult and advise on the work of the project. H2O has Patient Advisory Boards to engage with patients from the start of the project, to provide a patient perspective and to identify mechanisms for meaningful patient involvement and input throughout the project – a key to the success and shift in paradigm.

Stay tuned for further updates as the Patient Advisory Boards take shape! You can learn more about the relevance of H2O for patients here.

25th Februar 2021/von Felix Fischer
http://health-outcome-observatory.de/wp-content/uploads/2021/02/patients.png 600 900 Felix Fischer http://health-outcome-observatory.de/wp-content/uploads/2021/01/H2O-logo-hor-300x98.png Felix Fischer2021-02-25 18:41:582021-03-23 14:53:32H2O gets ready to embrace patients‘ views through the Advisory Boards

The governance principles of the Observatories are already starting to take shape

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The foundation work for establishing the national and European observatories is well under way.  The principles behind the governance of these new bodies have been written and agreed by the H2O Steering Committee at the end of January. These nine principles, together with the legal groundwork and the description of data flows and consents, form part of the first formal deliverable from the project that is currently being drafted: the “business architecture” of H2O.

In the first three countries – Austria, the Netherlands and Germany – workshops have already been held to kick off the discussions on how the new, not for profit, independent observatories are set up.  With these guiding principles, the work to set up these new organisations will be aligned across countries, and H2O will be able to build on this foundation to extend to more countries and more disease areas in the future.

10th Februar 2021/von Felix Fischer
http://health-outcome-observatory.de/wp-content/uploads/2021/01/ThinkstockPhotos-101152575-scaled.jpg 1707 2560 Felix Fischer http://health-outcome-observatory.de/wp-content/uploads/2021/01/H2O-logo-hor-300x98.png Felix Fischer2021-02-10 14:29:292021-02-11 16:48:15The governance principles of the Observatories are already starting to take shape

National activities pave the way for the first Observatories

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In addition to the H2O project kick-off meeting, held from 12-14 October 2020, national events are taking place in the four Tier 1 countries where the first observatories will be formed.

  • Austria held a national kick-off meeting on 05 November 2020. 39 representatives of all stakeholder groups attended. After a project introduction and overview, breakout sessions considered the topics Governance & Communication, Infrastructure & Technology, and Patient Perspectives.
  • The Dutch national kick-off meeting was held on 17 December 2020 with speakers from the Ministry of Health, Health Technology Associations, H2O Work Packages 1 and 5, all involved patient organisations, and Takeda on behalf of the EFPIA partners.
  • In Germany the national kick-off took place on 15 January 2021 with participation from all stakeholder groups.
  • Spain organised asynchronous meetings with stakeholders in January 2021, with a plan to pursue a formal kick-off meeting dependent on stakeholder availability and scheduling considerations.

These meetings and the information collected have established a solid foundation on which the national teams will implement the Health Outcomes Observatories. Beyond the kick-offs, each country is actively engaging with key stakeholders through further meetings and outreach in order to build support and participation, and to pave the way for future actions.


27th Januar 2021/von Felix Fischer
http://health-outcome-observatory.de/wp-content/uploads/2021/01/Europe2.png 900 1400 Felix Fischer http://health-outcome-observatory.de/wp-content/uploads/2021/01/H2O-logo-hor-300x98.png Felix Fischer2021-01-27 01:04:582021-02-11 16:47:45National activities pave the way for the first Observatories

Press release – H2O kick off

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The Health Outcomes Observatory (H2O) project kicks off with the aim of giving patients in Europe a more influential voice. Not only in medical decisions that affect them, but also in how healthcare systems can provide the best and most efficient care for all patients in the future. Read this press release and learn why 23 world-leading institutions—including university hospitals, patient groups, and pharma industry—are joining together to design the health data infrastructure of the future with the support of the Innovative Medicines Initiative (IMI).

H2O_PR1_press


12th Oktober 2020/von Felix Fischer
http://health-outcome-observatory.de/wp-content/uploads/2021/01/press-release-1.png 900 1400 Felix Fischer http://health-outcome-observatory.de/wp-content/uploads/2021/01/H2O-logo-hor-300x98.png Felix Fischer2020-10-12 13:08:532021-02-19 11:29:05Press release – H2O kick off

IMI funds a project to amplify patients‘ voice in health care

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The Innovative Medicines Initiative (IMI) has approved a 2o.6 million euros project to create an unprecedented, standardised data governance and infrastructure system across Europe to incorporate patients‘ opinions and preferences in decisions affecting their individual health and those of the entire community. Lead by the pharmaceutical company Takeda and coordinated by Vienna Medical University, H2O aims to improve health outcomes for patients, enhance health research prospects and foster a value based approach in health care systems. 23 partners from the public and private sector will collaborate in the next five years to define, design and implement a patient-centered, ethically and legally sound framework of Observatories.

The project will initially focus on setting up health outcomes observatories in four countries (Germany, Spain, the Netherlands, and Austria) covering three disease areas: diabetes, inflammatory bowel disease, and cancer.  In the longer term, H2O plans to roll out this framework of Observatories to other regions and countries in Europe and beyond to cover other disease areas. This innovative approach will imply that, going forward, treatment decisions will be informed in a systematic, standardised way both by clinical and patient reported outcomes measures. Moreover, this aggregated data will also form the basis of research into new, innovative, evidence-based treatments.

IMI is the world’s biggest public-private partnership (PPP) in the life sciences. It is a partnership between the European Union (represented by the European Commission) and the European pharmaceutical industry (represented by EFPIA, the European Federation of Pharmaceutical Industries and Associations). T

1st Oktober 2020/von Felix Fischer
http://health-outcome-observatory.de/wp-content/uploads/2020/10/imi-h2o.jpg 600 900 Felix Fischer http://health-outcome-observatory.de/wp-content/uploads/2021/01/H2O-logo-hor-300x98.png Felix Fischer2020-10-01 11:27:042021-02-19 11:56:35IMI funds a project to amplify patients‘ voice in health care

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  • H2O fosters debate on value-based, outcome driven healthcare in DIA Europe 21
  • H2O gets ready to embrace patients‘ views through the Advisory Boards
  • The governance principles of the Observatories are already starting to take shape
  • National activities pave the way for the first Observatories

ACKNOWLEDGEMENT

Dieses Projekt wurde von der Innovative Medicines Initiative – IMI 2 Joint Undertaking unter der Finanzierung Nr. 945345-2 gefördert. Dieses gemeinsame Unternehmen erhält Unterstützung durch das Forschungs- und Innovationsprogramm Horizont 2020 der Europäischen Union sowie durch EFPIA und Trial Nation und JDRF.

Über IMI

IMI ist eine Partnerschaft zwischen der Europäischen Union und der europäischen Pharmaindustrie, vertreten durch den Europäischen Verband der Pharmazeutischen Industrien und Verbände (EFPIA). Das Projekt arbeitet daran, die Gesundheit zu verbessern, indem sie die Entwicklung der nächsten Generation von Medikamenten beschleunigt, insbesondere in Bereichen, in denen ein ungedeckter medizinischer oder sozialer Bedarf besteht. Sie arbeitet, indem sie die Zusammenarbeit zwischen den wichtigsten Akteurinnen und Akteuren in der Gesundheitsforschung erleichtert, darunter Universitäten, Forschungszentren, die pharmazeutische und andere Industrien, kleine und mittlere Unternehmen (KMU), Patientinnen- und Patientenorganisationen und Arzneimittelbehörden. Die IMI ist die weltweit größte öffentlich-private Partnerschaft (PPP) im Bereich der Biowissenschaften.  http://www.imi.europa.eu/

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