Connecting patients and their data, wherever they go

Katja is taken to the nearest hospital. Clinical staff follow standard protocol and put her on a drip while she awaits the doctor. The doctor enters to find her red-faced and gasping, her throat so swollen she’s unable to speak. She’s allergic to the blood thinner in her IV, which any doctor in her hometown would have known by looking at her file. But here, an hour’s drive away, the hospital can’t access Katja’s files. Sixty years of critical information vanished the moment she left her district.  

For healthcare providers, the ability to reliably access patient medical record data is fundamental to the provision of safe and effective care. This is a problem shared by healthcare institutions around the globe, but I’d like to zoom in on one relatively small region. In the Netherlands, medical data is fragmented – by province and by healthcare provider. The Dutch government has started several programs to accelerate data exchange across healthcare providers, and to add to the challenge, they’re aiming for a plan that puts patients’ data sovereignty front and center. The system they’re working towards – in which patients control access to their data, including when and where it is available– underscores some of the key challenges for patient data sharing.

The current landscape: isolated and scattered

To build a system of interoperable patient data means mastering a series of challenges. First, the scale. Different regions (or different healthcare providers, networks, etc.) often use different software. That software is likely to have its data structured differently and define terms differently – including the use of different terms for similar medical events.

For example, in the Netherlands, hospitals tend to alternate between Chipsoft and Epic for their healthcare processes, but other healthcare providers use a wide variety of electronic patient record systems. There are many other medical records generated by other health-related practices such as optometry and dentistry generating their own data that is rarely interoperable even between one another, let alone with the greater healthcare ecosystem. Then there’s the expanding variety of new at-home patient apps, which are generally not integrated into hospital data systems. The worst part is: there have been attempts at solutions… but in some ways they’re making the problem worse. The rub is, a lot of different parties have come together and found workable solutions for their own subsection of the healthcare system. But these solutions are rarely compatible with each other, which – from a national stance – only adds to the overall complexity. It’s a rare problem that gets worse, the more you solve it. So, how does a country go about creating a single, centralized patient data network?

Aligning all parties with effective transformation management

Moving to a system of patient data interoperability requires the coordination of large numbers of parties. Two steps up front will make this process infinitely smoother: selecting a team with the singular purpose of managing the transformation, and agreeing, together, on what changes should be made. The end result the Dutch government is aiming for will likely be the most decentralized patient data system in the world. But the road to get there is quite the opposite – change management needs leadership, entrusted with the power to make decisions. There are many impressive ideas out there, and all the parties involved have something of value to contribute. But projects with this scale of complexity won’t move without centralized decision making.

The leadership team will face multiple challenges, including:

• Ending vendor lock-in
• Establishing the correct legislation
• Providing budgets for each healthcare provider
• Planning for provider IT architectures that are in varying stages of readiness

Other regions around the world are facing additional barriers to creating an interoperable healthcare system as well, including data security regulations (or more specifically, institutions’ reactions to those regulations), proprietary software, and reluctance to cooperate between competitors. Processes, behavior and governance require undivided attention. For all these reasons, an experienced change management team will need to work closely with the two major players involved: government and healthcare providers.

The role of government in patient data interoperability

The government has already enacted new legislation which will give healthcare institutions the right to access patient data in other institutions. The challenge now is to turn this technical change into a fully fleshed-out healthcare data access system that patients and workers engage in, and benefit from. There are four ways the government can facilitate patient data interoperability:

1. Ensure that in the coming data-sharing system, patients have the power to share their information. Currently, patients often rely on healthcare workers to enter their information into a database – owned by that institution – as well as to share that data. These rights should fall to patients.
2. Promote the option for people to share their medical information. Currently, data sharing occurs behind the scenes. This will become increasingly the responsibility of patients, and they must be made aware of the possibility, the benefits, and the means.
3. Promote data interoperability not only towards health care providers, but also towards IT suppliers. IT providers currently profit from selling access to the same data multiple times to different clients, meaning that public money is being spent on IT providers, rather than public health. There will be benefits in the new system as well, in the form of new opportunities for growth and innovation. But in the end, IT providers are in a different category than other stakeholders, in that their behaviors can be influenced through legislation.
4. Finally, the government should accelerate patient data accessibility and standardization through the use of an API strategy. APIs were designed for exactly this type of complex transformation, and circumvent the need to rebuild from scratch.

The role of healthcare providers in patient data interoperability

Healthcare institutions are the closest to their systems and their patients. They’re the ones who will ultimately implement the changes, and they are central to any transformation project. There are three key steps that healthcare providers can take, and they don’t need to wait:

1. Take a good look at their IT-architecture. Even before a nationwide effort, there is a lot to gain by optimizing IT architecture to become more interoperable both internally and, eventually, nationally and internationally
2. Data interoperability also requires state-of-the art security, across the board. This is both a technical challenge, and a behavior challenge, and it must be in place from the start.
3. The new law on data interoperability is not just an IT challenge, but also requires a change in processes and culture. Institutions can begin, in small ways, to promote a culture of responsible data sharing and collaboration between institutions.

Partnership and lasting success

When it comes to interoperable patient data, good isn’t good enough. Germany recently rolled out their electronic Health Record (ePA) which included many strengths. Unfortunately, it has failed to garner support from either patients or providers. Among other issues, providers report a lack of incentive, and patients have found that the system lacks an intuitive user interface. These two points are crucial to consider carefully. For a voluntary system to gain acceptance, the benefits must be clear, and the user experience must be clear and navigable. (Customers aren’t comparing their healthcare data app to other countries’ patient data interoperability apps – they’re comparing it to Twitter, Instagram, and other commercial products that have had millions of dollars poured into user experience.)

As I noted, I believe The Netherlands are well positioned to become a country with truly interoperable healthcare data and full patient sovereignty. I also believe their chances for success will rise significantly with outside support from a transformation partner. Whether as an advisor or change management leader, a transformation partner brings experience and perspective that drive projects forward.

Patient data interoperability will bring benefits to patients, doctors and healthcare institutions, and may lay the groundwork for future international collaboration. Capgemini has been recognized as a leader in digital transformation and change management for decades. For healthcare services in the Netherlands and around the world we see a once-in-a-generation opportunity. And for the people in these countries, we see a world where healthcare is reliable and safe, wherever they go. Contact me below to share your experience and learn more about data management in healthcare.