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Welcome to our autumn newsletter. In this issue, you can read about our recent highly successful annual conference in Madrid, and the growth of our Network of Excellence for hospitals. We are about to confirm the details of a two-day event in early 2018 focused on using health data to measure and improve clinical outcomes, and how investments in data quality and in advanced EHR systems can deliver benefit returns to hospitals. All stakeholders are invited, and we hope to offer a travel bursary to hospital participants. Watch out for an email invitation from us in the coming days. Please read the updates from our information governance task force as well. Don’t forget to browse further on our web site, which now has a new wave of video interviews including two health ministry speakers.
Dipak Kalra, President
Geert Thienpont, Managing Director
Realising the Value from Health Data
The i~HD & EMIF Joint Conference 2017 at the Research Institute of Hospital Universitario 12 de Octubre in Madrid was a big success. Well over 250 delegates from many different stakeholder communities debated how to realise the value from Health Data for Improving Care and Research.
Representatives of the Spanish and Estonian health ministries, demonstrated the importance of reusing clinical data for improving health care and clinical research on national and European scale.
Value-based and outcomes-based care was presented from diverse points of view from health insurance, pharma, health technology assessment and international policy.
The i~HD Network of Excellence for hospitals was introduced and three hospitals presented their approaches to enable the transformation to value based care and to scaling up the capability to undertake clinical research.
In the afternoon, the focus moved to the patient perspective regarding reusing health care data and how they can play a more active role in the ecosystem of clinical data. The key to achieving an ecosystem of health data use is to develop principles and solutions that are considered trustworthy by patients and by health care professionals. A patient representative powerfully rounded off the session stating “In the end, it’s all about trust.”
The second day of the conference was organised by EMIF (The European Medical Information Framework).
Many key persons in the realisation of value from health data attended our Joint Conference, and we took the opportunity to interview some of these European thought leaders about the importance of reusing clinical data for research and health care. The first series of these videos have now been published on our website. A second series of interviews will be made available before Christmas. Please, click here if you would like to see the interviews we filmed from:
Ain Aaviksoo, Deputy Secretary General for E-services and Innovation, Ministry of Social Affairs of the Republic of Estonia
Morten Kildal, Lead for value based healthcare, Uppsala
Arturo Romero Gutiérrez, Spanish Ministry of Health Social Services and Equality
Mitchell Silva, Patient advocate, Belgium
A quick update
i~HD has set in place several initiatives that are helping to promote a trustworthy ecosystem for reusing health data for research and learning health systems, as well as improving the quality of that health data. The i~HD Task Forces play a key role in realising these objectives. A short update:
The European Network of Excellence for Hospitals is an established network of hospitals across Europe wishing to accelerate the use of health (EHR) data for clinical research and to become better learning health systems. This year’s focus has been to further expand our network of European hospitals in order to establish a strong community. In order to achieve these goals, i~HD held two data quality workshops this year. Hospital presentations featured widely in our annual conference in September 2017, and we are now planning a two-day event with the i~HD Data Quality Task Force on using health data to measure and improve clinical outcomes in early 2018. Further details will be published in January 2018.
The Hospital Network Steering Committee is pleased to welcome Rocio Diaz, Chief Operating Officer (COO), Fundacion de investigacion HM Hospitales, as a new member. Ms. Diaz started off an initiative to establish a network of private hospitals in Spain. Through the Hospital Network Steering Committee a collaboration is being set up between i~HD and the above mentioned network of Spanish hospitals (HM Hospitales), where i~HD will be the European umbrella-organisation.
Rocio Diaz, Chief Operating Officer (COO), Fundacion de investigacion HM Hospitales
The Hospital Network Steering Committee is also pleased to welcome Rocio Diaz, Chief Operating Officer (COO), Fundacion de investigacion HM Hospitales, as a new member. Ms. Diaz started off an initiative to establish a network of private hospitals in Spain. Through the Hospital Network Steering Committee a collaboration is being set up between i~HD and the above mentioned network of Spanish hospitals (HM Hospitales), where i~HD will be the European umbrella-organisation.
Click here to read more about the European Network of Excellence for Hospitals.
At the i~HD conference in September we heard from distinguished speakers, but what was the most remarkable was a common theme around how the General Data Protection Regulation (GDPR) should not be seen as representing barriers and challenges to health data research, but an opportunity.
We do indeed have an opportunity to focus on what is important when it comes to protecting data - and the people about whom it has been recorded: firstly, a new focus on the “Natural Person” where their rights and concerns need to be addressed; secondly, transparency in governance and protection and finally a commitment to make the protection of data a core matter for working with sensitive data.
This is why the efforts that have been ongoing within the i~HD Information Governance Task Force have been such a privilege to contribute to: firstly, the completion of the first Quality Seal for Research Platforms to a software provider for clinical trials recruitment - this process harnesses the wisdom of pan European codes of practice, information security best practice, as well as the need for transparency over data use and protection, so that a meaningful assurance can be provided and the complexity of governance and security can be represented in a more meaningful, independently assessed package. Read more about the Quality Seal for Research Platforms here.
Secondly, efforts to develop independently reviewed codes of practice and operating rules when handling health data for research are continuing to grow, in order to harmonise practice throughout the innovation community so that site specific governance guidelines and policies can interoperate as data is captured in one context and the protection expectations can be honored as it is shared and used in others.
Finally, none of these efforts could be any better than window dressing without the community engagement and interchange that i~HD tries to enable through its conferences and workshops, between data service providers, data sources throughout hospital networks, patient community forums and legislators - for the betterment of health and society.
Click here to read more about the Information Governance Task Force.
One of the core activities of i~HD is the ongoing work within the Data Quality Taskforce on health data quality dimensions, assessment methodologies and improvement strategies. Health data quality was one of the topics of the first hospital network workshop in Brussels in February 2017, which was well attended by 80+ participants representing 50+ hospitals in Europe. A follow-up workshop dedicated to data quality was organised in May 2017. During that workshop topics were presented on investigating, measuring and improving data quality in hospitals. Practical use-cases on data quality aspects were presented by hospitals in Finland, France, Spain and the United Kingdom and brainstorming sessions on improvement strategies and the development of business use-cases were conducted.
i~HD is now working towards the organisation of its third major two-days event with the i~HD Hospital Network Steering Group in March 2018 -location to be announced soon on our website-, which will be a joint collaboration with The International Consortium for Health Outcomes Measurement (ICHOM).
During this two-day event in March, we will present our nearly-finalised assessment tools for data quality in hospitals, along with our newly developed standard operating procedures for improving hospitals’ data quality.
Clinical and patient-reported outcomes will be the focus on the first day of the workshop. During the second day business use-cases and return on investment aspects will be discussed. One of the main objectives of the i~HD Data Quality Task Force is to launch in 2018 a European Data Quality Service.
The March 2018 workshop will be a great opportunity to present the outline of this Service. Come and join us there! More details will be published on the i~HD website soon.
Click here to read more about the Data Quality Task Force.
During the closing session the i~HD conference, Dipak Kalra, President of i~HD, announced the intention to seek funding for two new initiatives: “i~HD will start working on a repository of evidence that shows the benefits of reusing clinical data in an interoperable framework. We will also examine possible good practice models for patients to become ‘data donors’.”
“We need to communicate to patients the benefits of sharing personal health data for clinical research and healthcare improvement”, said Mary Baker, Past President of the European Brain Council. “All stakeholders should come together to help us to achieve these objectives.", she added.
Mary Baker, Past President of the European Brain Council
“Computer Methods and Programs in Biomedicine”
Three of the i~HD Data Quality Task Force members have been invited to become Guest Editors for a Special Issue on “Biomedical Data Quality Assessment Methods” in the journal “Computer Methods and Programs in Biomedicine”: Juan M. Garcia-Gomez (Universitat Politècnica de València), Carlos Sáez (Universitat Politècnica de València) and Pascal Coorevits, (Ghent University & EuroRec).
The journal covers the following topics: Computer Science, Theory & Methods (Q1, 21/104); Medical Informatics (Q2, 9/24); Engineering, Biomedical (Q2, 26/77); and Computer Science, Interdisciplinary applications (Q2, 32/105). The journal has an Impact Factor of 2.503.
The aim of the Special Issue “Biomedical Data Quality Assessment Methods” is to encourage researchers to present original and recent developments on Biomedical Data Quality in large-scale and multi-site repositories or routine healthcare data with sights on data reuse. The Journal welcomes researchers from both academia and industry to provide their state-of-the-art technologies and ideas covering all aspects of computation methods, health strategies, applications and procedures for biomedical data quality assessment.
The i~HD Data Quality Task Force cordially invites you to submit a manuscript for consideration and possible publication. You can find more details of the Call for Papers on the website of Elsevier.
The official deadline for submission is April 1st, 2018. However, you may send your manuscript to one of the i~HD guest editors at any time before the deadline. In case you need any further information, please contact one of the guest editors or the Elsevier Editorial Office.
Ghent University & EuroRec
Juan M. Garcia-Gomez
Universitat Politècnica de València
Universitat Politècnica de València