Our October General Assembly was an important milestone for H2O. During the Assembly, we recognised the considerable progress made towards creating the foundation of the H2O project; the result of many months of hard work across the consortium.
The goal for H2O is to create a standardised language for patient reported outcomes (PROs) so that patients have better discussions with their doctors. We believe that this language has the power to provide data which will drive better research, development and decision-making throughout the healthcare system, advancing value based healthcare.
The goal for H2O is to create a standardised language for patient reported outcomes (PROs) so that patients have better discussions with their doctors.
Putting the building blocks in place to achieve this has been a privilege and also a challenge!
During our General Assembly, we were proud to share our progress on a number of fundamental activities. These included;
- Our approach to creating a standardised language via a Delphi process; a methodologically sound way of reaching consensus. To find out more about how we are defining this language, click here To see the article published in NEJM Catalyst, click here.
- Building a governance model which would ensure the safe and ethical storage of the data collected by creating H2O observatories. Stay tuned for more information about the steps we are taking to build a sound governance model.
- Designing a data infrastructure which balances the needs of technology and ethics; to create ‘networks of trust’. To find out about why partnership in technology is so important to H2O, click here.
- Creating a business model which will sustain us beyond our funding period in 2025. Stay tuned for more information about H2Os sustainability. In the meantime you can read about the Observatories here.
H2O doesn’t sit in its own bubble; the success of the project relies on working within a complex healthcare environment shaped by policies, economic trends, public debate and a fast-moving post-COVID world. We strongly believe the momentum is building in our favour, as we see a wider appreciation of the value of data, along with calls for responsible data sharing to forward science. We also see an increasing appetite for PROs amongst healthcare providers and regulators which demands an ever more sophisticated infrastructure for defining and sharing the data sets these PROs produce.
H2O doesn’t sit in its own bubble; the success of the project relies on working within a complex healthcare environment
We brought some of these discussions into our Public Section of the General Assembly though a series of panels;
- The value of PROs in the consultation room was demonstrated in an extremely engaging keynote speech from Judith F. Baumhauer, M.D., M.P.H., Associate Chair of Academic Affairs and Professor, Department of Orthopaedics at the University of Rochester, Director of the Clinical BioInformatics Core for the UR Health Care System and board of director of Accountable Health Partners, ACO for the Rochester Region. You can read a summary of Dr. Baumhauer speech here or watch full recording on You Tube.
- Our panel entitled ‘Patient reported outcomes measures in consultations’ included Linetta Koppert, MD.PhD.MSc. Surgical Oncologist at Erasmus MC (The Netherlands), Diane Delnoij, Prof. DR. D.M.J. Endowed chair as professor of ‘Governance of healthcare quality and efficiency’ at the Erasmus School of Health Policy & Management. Scientific officer for the Dutch National Health Care Institute (Zorginstituut Nederland, Evelyn Gross Mrs, CRO for neurodegeneration as a preclinical research associate and board member of the Austrian Crohn’s Colitis Association, Esther Goud, patient.
- Our panel on’ Data as an Essential Resource’ drew together Peter Singleton, Mr, Information Governance Expert at The European Institute for Innovation through Health Data (i~HD); Karen Marie Lyng, MD, PhD, MBM, MI Head of Department, Department of Data Quality and Registries, The Danish Health Data Authority; Ian Forrester, QC, JD General Court of the European Union 2015 -2020 and Brigit Bauer, Mrs, social Media & Digital Health Expert, Journalist, Speaker and Analyst and Patient Expert. They explored the legal precedents showing data can be viewed as essential to innovation as well as touching on the complexity this brings.
We hope you will continue to follow our journey and be a part of a new way of sharing health data as an essential resource.
This last year have been a huge combined effort from all of our partners and we are excited about the future. We hope you will continue to follow our journey and be a part of a new way of sharing health data as an essential resource.
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