Navigating the Data Maze: REN’s Strategy for a Connected Healthcare System

We sat down with Stephanie Wijbrandts, Director of Regionaal Elektronisch Netwerk (REN) in West Brabant, Netherlands to discuss how they are helping different organizations in the healthcare system to come together and collaborate to provide the most informed, effective, and efficient patient care.

REN is a non-profit institute with most of its funding coming from hospitals and healthcare organizations. This funding enables them to work on the digitalization of healthcare processes between healthcare organizations. This includes processes to: 

• Transfer patients from general practitioners (GP) to a hospital or from a hospital to home and also get care at home
• Manage care outside the walls of the healthcare organization between pharmacists, doctors, and also caregivers

The problem - no single source of truth about patients

Stephanie highlights three of the key stakeholders in the processes they help: the GP, the physicians at hospitals, and the pharmacists. All of them either don’t have access to the electronic health record of a patient in the same registration system as other stakeholders or if they do, it’s either incomplete or inconclusive. 

She explains this fragmented access and discrepancy using an example and says, “So for instance, a GP tries to get an overview of all the medication a patient takes. They have one overview from their (own) notes and interactions with the patient in the last 20-30 years. There is another overview from a specialist in the hospital after, for example, a knee surgery and there is another overview from the pharmacy. So, there are three lists and they do not match. There is no single source of truth and the patient does not have the full list either.”

Diving deeper, she expresses how data is really important to get better patient outcomes but due to the lack of nationwide agreements on how to share and exchange patient information in the Netherlands, there is no foundation to exchange data.

Patient data exchange - how it works now

Stephanie, a post-master in Clinical Informatics, shares that the current setup is a network of senders and receivers. This means that when a patient is transferred from one healthcare provider to another, their documents are sent too as a message. Sometimes, when a patient is getting treatment from multiple healthcare providers, there is a lot of messaging between healthcare providers - which is just an exchange of information. 

Sharing her point of view on healthcare data exchange, she says, “With data exchange, when messages and documents are exchanged, only pieces of the puzzle are exchanged - which are needed to do some clinical research or treatment of the patient.”

Elaborating on it further, she gives an example of how different stakeholders with different objectives impact patient data quality. She says, “A hospital focuses on treatment, acute and urgent care. It’s a fast-paced environment, you go in as a patient, go through all the treatment, and go out. (Compare that with) Nursing home is about quality of life. It’s about peace and rhythm and it’s more about the client and their living habits. 

In the hospital, when you register patient information, you use L for left and R for right and you give numbers to pain score whereas, in a nursing home, it’s free formats with some standardization (which is more appropriate for this situation) - it’s all about the patients describing their problems in details, for example, this patient is 91, she has dementia, she changes their day and night rhythm and so in the night she is awake which means in the morning she’s not up for breakfast on an early hour, so on the long term she’s at risk for malnutrition. So it’s totally different. 

So those two worlds cannot communicate when you send messages. They do not fully understand each other’s messages (context).”

Moving from data exchange to data availability 

Stephanie understands the inner workings of different healthcare systems and goes on to share how data is added to healthcare systems. She explains, “GP has a way of documenting all the information. Healthcare professionals at a hospital have their (own) way of registering patient information. Those are two different worlds and sometimes they do not understand each other and next to these two different worlds, you have a pharmacist who does things their (own) way. Then, adding to this you also have mental care institutes, home care, and nursing care. 

If you use messaging as it’s used now, you can miss context and nuance in patient information. With an overview, you understand other partners in the whole healthcare network, can respect each other’s differences and it’s more inclusive.”

At REN, Stephanie and her team are gradually growing into developing a network in West Brabant and also in the rest of the Netherlands. They are moving towards an overview of a patient and a full networking experience through data availability instead of data exchange. She believes XDS (Cross-Enterprise Document Sharing) is the foundation for data availability and real-time data sharing in the Netherlands. 

Stephanie adds, “XDS - that’s the overview and the star construction from which all the data can be received and shared in real-time. That is the future (of data availability) in the Netherlands but we’re still holding on to the messaging since XDS is felt to be complex and difficult to implement because it requires healthcare staff to change the way they work.

Data availability is only the beginning of collaboration between healthcare organizations. Collaboration between healthcare organizations is the future. If you don’t collaborate you will not make it. Especially because in the near future there will be a labor-to-capacity shortage and also patients are getting older and getting more complex diseases. So there are more healthcare providers needed for the treatment of one patient.”

A study researching multimorbidity and co-morbidity in the Dutch population found that among patients over 55 years with a specific chronic disease, more than two-thirds also had one or more other chronic diseases. This makes patient overview and collaboration an important need in the present and the future. 

She makes a passionate argument to focus on long-term thinking in healthcare and says, “To go from data exchange to data availability you have to focus on the long term. So you need to focus and collaborate with the Government and with the Boards of Healthcare Organizations. When Government or Board members want to significantly contribute during their time in office, they often choose the short-term solution to make a difference.”

The role of REN

As a regional institute, Stephanie highlights one of the key responsibilities for them is to prioritize. As a non-profit funded by 23 healthcare providers, they need to manage their projects and ensure they think long-term while bringing stakeholders from the different healthcare providers aligned about the goals. 

They approach this by conducting extensive research about digital strategy and talking to these 23 healthcare organizations, collecting information about what the future will look like for digital healthcare and healthcare data exchange. 

Going forward, they have two main areas of focus: 

1. Standardization and data availability: They aim to follow a model such as the Continuity care model and the Twiin model in the Netherlands. This focuses on multiple aspects that can help make a healthcare organization the most interoperable such as patient consent, localization of health records, authorization, etc. 
2. Overview: They have a lot of requests asking how can different healthcare organizations get more information to provide the best care. So, they plan to focus on overview solutions - not messaging solutions anymore. 

It’s not an easy job. Stephanie shares, “As REN, we are coordinating and facilitating all the healthcare organizations to measure on what level they are now at all the aspects and how can you grow into higher levels such as patient consent for your organization and patient consent nationwide, so you can exchange the information.

Our biggest challenge is making choices for software solutions or for redesigning a healthcare path. You can go for solutions that work today, but in the end, you do not know if it’s the most future-proof and durable long-term solution but, you want to have a solution that works for the long term. If you want to have a solution that works for the long term, you should do more research and make more agreements in the region. For instance, we don’t do messaging anymore, we do an overview (data availability). Sometimes you have to do this and just go with a solution of today, knowing that you don't know if this will stick long-term,  but you have to, you need something today because of the urgency, in the healthcare process.”

REN, while managing this complexity, has only one objective - patient care. They treat every healthcare organization as one, acknowledge their uniqueness, and help improve them to provide better patient care.