Why do we need to connect and combine health data sources?

As people live longer, they need more complex healthcare. We get healthcare in more than one facility and travel inside and outside our countries ever more. We want to be sure and expect that our health(care) follows us where ever we are. Your GP/regular attending doctor knows you from when you were a toddler and has records about all your vaccinations and your entire medical history. But what happens when you see a new specialist, move or travel and your health data doesn’t automatically follow you.

It would be great if you and your treating doctor could have access to all this information anywhere at any time to make the best care choices possible. Connecting and combining health sources seems a logical way forward, but why isn’t this happening?

There is a lack of interoperability (capacity for systems to exchange information) between health records. This is particularly true when it comes to the inability to communicate clinical information electronically. Not all data source can be easily linked and connected. This is true for many things in life, like the electrical sockets used worldwide.

This lack of interoperability has a negative impact on the quality and safety of healthcare in much the same way you may damage an electric devise if u don’t know and use the right electric socket adapter, but in this case damage can happen to you. Lack of interoperability may mean lack of data and result in slowing down care or increasing the costs of clinical research, which may mean more expensive drugs to you as a patient or tax payer.

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Why is there a disconnect? Why are we not there yet?

There are many reasons why standards and interoperability are not in place yet. With the advance in healthcare and research, the care of most health conditions has become more complicated, due to more sophisticated treatments and more complex investigations. This leads to more “islands” of technological equipment, information and information systems supporting them.

As we live longer, we accumulate more long-term conditions which are treated by different medical teams. There is a need for a comprehensive picture on a patient’s health and care history. This will help making safe and effective decisions and avoid duplicating tests or repeating previously failed treatments.

 

The ultimate goal is personalised medicine. In order for this to become a reality, every health professional treating a patient needs to have a complete and detailed patient health picture. Currently, doctors treating a patient often duplicate tests and may at times prescribe conflicting medication which is a burden on healthcare budgets, wastes the patient’s time and may harm his or her health.

There is an increasing demand by consumers for an interoperability friendly environment. Yet still there is a lack of pressure by governments to make this a reality and some Industry partners are still more or less ignorant of the importance and benefits of how to do interoperability.

What are interoperability standards, what do they deliver?

What would the world be like without standards and measurements that everyone can agree and count on?

Here are some examples:

  • Time: Without having a standard for time and date, we would never arrive at an appointment on the agreed hour. Could you image if 1 hour meant 60 minutes in one place and 65 in another?
  • Distances: It’s important to agree on the distances we measure to go from and to work or on holiday. Imagine that 1 meter would mean the distance equal to 1 yard in another context or that architects use a different measure than a builder?
  • Joint schedules or equipment: Cars are built of many materials and pieces which require them to be compatible to fit. Cars would look very different if pieces and equipment wouldn’t be streamlined.

This is why standards exist, to maintain meaning across cultures and contexts.

Standards are everywhere, or maybe not…? What about health care information standards?

Many health care systems have created their own standards to compile, assess and store health data. Problems often arise when health care systems want to compare and combine data. That’s where interoperability standards come in. Interoperability standards provide a standardised approach to facilitate seamless sharing of information between health information systems.

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Who develops standards? What standards deal with health data?

Standards in health care are not new. Initiatives to create health interoperability standards started over 30 years ago. Comprehensive standards for the representation, communication and security of clinical data are over 25 years old.

Standards established by government and industry help foster better communication between disparate systems. Interoperability in terms of healthcare makes it easier for medical services providers to share patient information with one another. There are officially recognised bodies that develop most standards, called SDOs. Examples of SDOs are ISO and WHO.

Examples of initiatives can be found all over the world, including Europe and the United States.

SDO = Standard Development Organisation

ISO = International organisation for Standardisation

WHO = World Health Organisation

Europe is especially strong in promoting the greater use of standards. The European Commission published an eHealth Action Plan 2012-2020 which aims at making better use of Information and Communication Technologies (ICT) to improve healthcare in Europe. The Action Plan focuses on developing common standards to enhance interoperable healthcare systems among member states. https://ec.europa.eu/digital-single-market/en/interoperability-standardisation-connecting-ehealth-services

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Who uses standards? Where are they used?

Everyone around the world should be using and benefiting from health standards, but are we?

The adoption of standards and interoperability is limited and today most patients still experience poor levels of information sharing between their care providers. But not only patients want and need standards to live happier and healthier lives.

Hospitals rely on standards to exchange health data for quality improvement, to monitor patient safety and to take part in research, industry needs health data to be shared in order to create new, safe and effective drugs and devices. Finally, small companies (SME’s) working in healthcare need standards to exchange and link their healthcare apps and devices to (mobile) IT systems.

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What are the benefits from using standards: for patients, for industry, for health?

There are many benefits for interoperability in Healthcare for different stakeholders/users. The list is endless, but here are some benefits of interoperability standards in healthcare for different users/stakeholders:

Healthcare Professionals

Benefits

Improved quality and safety of care through strengthened coordination; up- to-date patient status information and evidence-based clinical guidelines to support decision-making procedures and reduces errors. It also increases productivity and reduces costs. The productivity of healthcare staff can be significantly hindered without system interoperability.

Patients

Benefits

Enhanced safety of treatments received, delivery of care at the point of need, integrated care including quality and safe treatment abroad, e.g. in an emergency situation in another EU Member State. It also improves patient privacy and improves the patient experience. Increases the chance that you will one day be able to see your electronic health records from home on the internet or on your phone, a right which you already have.

Users

Benefits

Interoperable systems result in significantly lower implementation and integration costs. For example, an MRI image from a hospital can be exchanged and used by various professionals and structures without the need to repeat tests.

Healthcare Businesses

Benefits

The use of a common eHealth EU Interoperability Framework (EIF) can help expand a digital single market for healthcare, opening up competition and reducing costs for developers. In this sense, cooperation is vital: a thorough and wide collaboration allows sharing costs and reduces future re-investments to update systems.

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Calls to action – what can you do?

Do you have questions or suggestions? Just send us a message!

    Our Mission

    Our goal is to provide educational information about health ICT standards to

    • enable decision makers, SMEs and the public to better understand the health ICT standards landscape,
    • promote the value of interoperability standards,
    • know when and where standards adoption can lead to valuable and needed interoperability,
    • champion the adoption of standards, potentially as a positive disruptive influence in our ecosystem.

    About

    Digital Health Standards is a joint communication effort between the DigitalHealthEurope project, empirica and the  The European Institute for Innovation through Health Data to educate on health ICT standards.

    Digital Health Europe
    Digital Health Europe
    DigitalHealthEurope will provide comprehensive support to the Digital Health and Care Innovation initiative in the context of the Digital Single Market Strategy. The project’s approach involves a number of actions that will boost innovation and advance the Digital Single Market priorities for the digital transformation of health and care (DTHC), as outlined in the European Commission’s 2018 Communication on the topic. The priorities concern:
    citizens’ secure access to and sharing of health data across borders
    better data to advance research, disease prevention and personalised health and care
    digital tools for citizen empowerment and person-centred care.
    To achieve these three priorities, the project work plan offers two forms of support.
    Together, they will form a common vision of EU coordination and support for DTHC beyond 2020.
    empirica
    empirica
    empirica Communication and Technology Research has been a private, internationally active research and consulting company in Bonn since 1988. Our focus is on digital change, the development and implementation of innovative concepts for the sustainable improvement of living and working conditions, and the enhancement of the innovative ability and competitiveness of economies and societies. Our main areas of research and consulting are Energy, Digital Health, eCare & Ageing, eSkills & Work. Over the last 30 years, empirica has developed into a leading provider of research and consulting services at the European level in these fields, especially for the European Commission and international organizations.
    The European Institute for Innovation through Health Data
    The European Institute for Innovation through Health Data
    The European Institute for Innovation through Health Data (i~HD) has been formed as one of the key sustainable entities arising from the Electronic Health Records for Clinical Research (EHR4CR) and SemanticHealthNet projects, in collaboration with several other European projects and initiatives supported by the European Commission.
    The vision of i~HD is to become the European organization of reference for guiding and catalyzing the best, most efficient and trustworthy uses of health data and interoperability, for optimizing health and knowledge discovery.
    i~HD has been established in recognition that there is a need to tackle areas of challenge in the successful scaling up of innovations that critically rely on high-quality and interoperable health data, to sustain and propagate the results of health ICT research, and to specifically address obstacles to using health data that are not being addressed by other current initiatives.