Anna Adelöf Kragh has been engaged in standards for health data for quite a few years now, currently at Venzo Public and Healthcare, priorly at NNIT, SNOMED International, as well as the European Commission , where she represented the Swedish Ministry of Health and Welfare. Anna has kindly agreed to answer our questions on the future of interoperability in healthcare.
Let’s start with a global question. We can see now how many initiatives on interoperability strive to be global. Do you think it is an achievable goal? Why?
To be honest I think it’s a must. To all global there is a local aspect but end of the day it will make a huge difference, both on cost and on patient safety, if we align and make use of the same standards. The need is clear, but you ask if it’s possible. I think so, for one I have seen a shift where most countries focus on learning by others, SDOs focus on collaboration and making their product not only available globally but also aligned to each other. I see governments moving towards decisions on usage of interoperability standards and they do so by looking at others. So yes, I do believe it’s possible, it will take time, but I am confident that we are on that road.
Many mention FHIR to be well on the way to become a de-facto global standard. In which areas do you think it needs to be expanded to become global?
Yes, FHIR is definitely something that has accelerated the process. I think what HL7 did with FHIR was to make it a bit easier, dividing the quite hard and complex task into chunks that was more easily digested. Where it needs to expand to become global, well here I needed to call a friend 😊 and was provided some great input. HL7 has a 80/20 approach where FHIR isn’t intended to be a complete solution out of the box. It will always require localization and customization to certain use cases. However, the 80% part is the strong part – the 80% we can all agree on because it is common across different settings and nations. That forms the foundation of global interoperability. Healthcare is always evolving, FHIR will get more and more stable with time, but it will be very difficult to ever reach 100%. However, the more usage there is of FHIR the more refined it will get and the higher a percentage we will reach as it’s a community effort with everything that’s global.
What other players are out there with a potential to grow global?
I believe there are different aspects of this question. There are standards that has been global for a long time, most often in a certain domain in healthcare. You have LOINC, CDISC, DICOM, GS1, ISO, CEN etc and then you have an increasing growth of standards that connect the dots or cover a larger space. Here we see quite a few technical but also semantic standards. I’m sure I don’t have a full list, always forgetting something, but I can see an increased usage of SNOMED CT, OpenEHR, HL7, IHE, IDMP, ICNP and in general a larger uptake of standards in documentation, not only in relation to devices and brands but to ensure reusability of data both for personalized medicine and decision support as well as research and analytics.
What can the globalization of standards may bring to us, end users of the healthcare system, in the future? What benefits does it bring to other healthcare stakeholders, health related government agencies, the industry, the medical community, to patient organisations?
Benefits are manyfold and it can be turned and twisted depending on the perspective. My starting point is always quality of care and patient safety, that we have what is needed and available to ensure that we do our absolute outmost for our patients. Standards provide many aspects of this, it gives our EHRs and documentation tools the possibility to drive care, make use of smart applications and algorithms that can see what our eye can’t or that the care personnel yet did not think of. It makes it possible to get to a deeper and more detailed level of research and make conclusions based on granular and depersonalized patient data, researchers will be able to make use of the data, ask questions based on selected criteria to a larger extent. We often talk about personalized care, standards are one building block in making that happen as making it personalized requires that there is data that can support the analysis and treatment recommendations.
For the industry there are also several aspects, the two stronger ones are 1) that it can help make their products stronger and make smaller players plug in to the larger solutions easier and 2) that cost wise it is beneficiary if their customers make use of the same standards so that they have to customize less.
The International Patient Summary will carry on the work we did in epSOS as well as initiatives in other parts of the world, to ensure that people on the road across borders get the best possible care and don’t have to wait to go home to get their medication. I live and work in a cross-border region where I work in one country and live in one, being able to limit the risks involved in that from a healthcare perspective is surely an ambition of mine so the existence of an international agreement on sharing data would be a huge milestone.
What, in your view, are currently the main challenges in interoperability of healthcare standards that are likely to be addressed in the near future, 1-3 years from now?
I think the main challenge that remains is the cost. Interoperability is not something one just does; it has a quite large investment cost and requires commitment from many. This is as I see it being addressed with step wise strategies, standards are implemented in specific areas and in a stepwise approach. The other challenge has been on agreeing, it’s hard within a country to agree on a defined road ahead which is so detailed to what standards that is to be used and not easier on a regional level such as the EU. We can agree in theory that we need to get there but the actual step to start the work and agreeing on how is hard to do. But I see great achievements in that area too in the EU for example as well as Asia pacific for example.
What about the longer time horizon, 3-5 years? What do you think will come afterwards, of challenges and new opportunities in health data sharing?
Healthcare is as mentioned always changing, what was said yesterday is changing today as will standards do, or at least those standards that wish to survive needs to be ongoing and adapting to changes. I strongly believe that we only have one direction we are heading, it’s been evident over the last 10 years if not longer and its accelerating. I believe that we globally has agreed that that was the way to go, today we have figured out at least to a point what we need to do go move forward. I think that in 3-5 years interoperability will be even more widespread than it is today with much more data sharing globally being the base of it.
This whole Covid situation has shown us what data means, how quick and correct data and knowledge sharing can make a huge difference in saving someone’s life, or rather a large groups life and getting the right medication/vaccine in place quickly. The incentives are there and now clearer than ever, so what comes after will be very interesting to see, hopefully we will stand much stronger the next time a pandemic comes around.
There is a gap between developing interoperable standards and adopting them. What can be done, in your view, to promote adoption of such global standards?
Lots can be done, to pin it down to a few points I believe knowledge and sharing of knowledge is key, not having to invent the wheel over and over. All countries are different so there will always be a level of localization, the question is if there are people who can make that localization easier. Now there is, that wasn’t the case some years back, knowledge was not spread out to a large extent, so each country had to figure it out themselves. Today there are a lot more tools and networks to make that journey a bit smoother. Then money of course, as stated earlier, to implement standards you need to be committed to what it means. End of day it doesn’t necessarily mean a lot more but there is an investment cost
Do you think that harmonization of healthcare standards may be achieved in the same way it has been done in many areas of international trade and, earlier, in aviation? If yes, when can we expect it?
No, I don’t think it is possible. If it was possible, it would have been done already. Many things we share in healthcare but there are also quite a few aspects that we don’t share, and that fact makes it more difficult than introducing universal airport codes. Healthcare changes all the time, new research is found, new treatments, new diseases, we can share a lot of those but the need for governance and adaptation is too large to reach what we have in other industries. Happy to be corrected though as it would be lovely if we could have high quality and such level of harmonization.
Do you believe dedicated education is required in interoperability standards to medical professionals? If so, what do you think it should cover?
I wouldn’t say that there is a need for a course in interoperability, but there is a need to be more focused on documentation, why we document, for who, what’s important, why all these requirements in the EHR are there and why there are legal requirements. I’m not a medical professional, but I’ve seen quite a few curriculums through the years, and most of them focus on how you document a healthcare encounter etc but not why. If we can get the WHY in a bit better way, I think it will be easier to create the data we need, but also to make the changes we need over time.