The European Institute for Innovation through Health Data is a multi-stakeholder organisation. Our role is to help to develop and to champion the adoption of strategies and solutions that enable all stakeholders to have access to the best possible quality of health data and to obtain the best insights from health data.
Data quality is a kind of holy grail that is often spoken about, complained about when is is not good enough, but not often actioned on to improve it. When preparing this conference, we identified and invited a wide range of experts from all over Europe, from different organisations and stakeholder backgrounds to examine the topic of data quality together. It has been a real pleasure to bring these diverse data quality champions into one environment.
For me, putting together this conference programme over many months, inviting people I’ve known for years to come to this event, my agenda was not only that people in the audience should learn about data quality from various experts, but that these invited European and world experts would be exposed to each other’s perspectives too. Sometimes they work in their own corner of the data quality issue, like an AI developer or a patient or a hospital manager. One of the real objectives I had for this meeting was to get all of these speakers to hear each other and learn from each other, to collectively to realise the most important message of all, which is that data quality is no longer something we should dream about. It’s no longer something we should just talk about and complain about. It’s something we have to address. Addressing doesn’t just mean measuring. It means improving data quality, helping to get better data for Europe so we can all benefit from it in the many ways we’ve been hearing for two days.
The most important take-home is that nobody can do it alone. No stakeholder or organisation can improve data quality alone. Saying to a health ministry that it’s your problem to solve, saying to the European Commission that it’s your problem, is a mistake. Our data quality ambition will only be achieved if we work together, understand each other, respect each other’s perspectives, collaborate and co-operate. That is the spirit I’ve picked up today, when I’ve been able to listen remotely. (As you know, yesterday I couldn’t attend anything. I was in hospital missing you all.) But I’ve picked up a lot from today. The stakeholder collaboration spirit is really strong: people were indeed learning about each other’s perspectives. So, my wish hopefully has come true: we now have a stronger community in Europe, realising with a greater perspective than before how to work together, to get our health data up to a quality standard when we can use it well, improve health, improve care, accelerate research, innovate, and be creative. I feel very excited for that.
Paul, thank you for your side of the equation. Looking after the practical dimension of this conference, keeping it running, also Ricardo and his team at the University of Porto who have been strong scientific collaborators in helping to fill the programme with great speakers, and of course to my i~HD team who have worked intensely to prepare this conference and then to run it. I’m grateful to everybody.
I’m also really positive about the multi-stakeholder community building that’s taken place for two days. I hope we can cement that through a Porto Declaration on Health Data Quality, that we will agree to over the winter period.
About the author
Professor Dipak Kalra is President of The European Institute for Innovation through Health Data (www.i-hd.eu), a Professor of Health Informatics and a former London general practitioner. He plays a leading international role in Electronic Health Record R&D, including the reuse of EHRs for research. He has led the development of ISO standards on EHR interoperability, personal health records and data protection. He participates in multiple EU Horizon 2020 and IMI projects including the generation of real-world evidence in pregnancy, the governance of patient-centric clinical trials, frameworks for the design and governance of mobile health programmes, scaling up the quality, interoperability and the reuse of health data for research including inputs to the European Health Data Space, scaling up of the collection and use of health outcomes towards more value-based care, and initiatives to explain the value of clinical research to the public.
