The 7 concerns about Unified Access to all relevant Patient Data and How to Tackle them

In the last edition outlined why it is important to have one Unified Access to Patient Data.

For example, we keep talking about the “garbage in, garbage out” principle, the importance of data security, and "the patient is the data" as the driver in the importance to keep control of the quality of data. And whether or not to share this medical information.

The 7 biggest Concerns people have about Unified Access to Patient Data

We need to keep in mind that such a system would also raise some concerns, including:

1. Security risks:

The more data that is stored in accessible places, the greater the risk of a data breach. It is important to ensure that patient data is stored securely and that access is limited to authorized individuals.

2. Technical challenges:

Creating a unified system for accessing patient data can be technically challenging, especially if data is stored in multiple locations or in different formats. It is important to ensure that the system is interoperable and can work with existing systems.

3. Privacy concerns:

Patients may be concerned about who has access to their health information and how it is being used. It is important to ensure that patients have control over their data and that their privacy is protected.

4. Resistance to change:

Some healthcare providers may be resistant to adopting a new system, requiring significant education and training.

5. Legal and regulatory challenges:

There may be legal and regulatory challenges to creating a unified system for accessing patient data, especially if data is being shared across different organizations or jurisdictions. It is important to ensure that the system is compliant with relevant laws and regulations.

6. The system would have to be rightsized from the start as any fundamental change afterward would come at a considerable cost.

This doesn’t mean the system needs to be largely oversized in the beginning but needs to be designed for growth from the start!

7. The unknown

We actually ended with 6 main concerns, but want to keep 1 point open that we received from our community. Is there a big risk/concern that is missing in your opinion? Then please share it in the comments so we can complete the list.

8 Recommendations for Achieving Unified Access to Patient Data

To achieve Unified Access to patient data while addressing the benefits and concerns outlined above, the following recommendations should be considered:

1. Device an umbrella system

This would mean a system that doesn’t take away of the current investment in people, training, installed base or knowledge required to access and operate it. Every facility currently using and EMR/GMR should NOT require any extensive retraining to use the additional information awarded by a unified access sharing.

2. Make sure that we start from healthy data

Not data that has not been verified to be correct and in the right fields. A unified access will only work if and when the data is correct and in the correct location in the original system. Unfortunately, we do not start from a clean slate so knowing the source system has cleaned data will warrant reliable and trustworthy sharing. The patient will have a key role in supervising correctness of data up to a certain level.

3. Give patients control over their data:

Patients should have control over their data, including the ability to review it for accuracy and share it with other healthcare providers as they see fit. This can be achieved through the use of patient portals or other tools that give patients access to their health information.

4. Ensure that patient data is accessed securely:

It is important to ensure that patient data is accessed securely and that access is limited to authorized individuals. This can be achieved using encryption, access controls, and other security measures. In case of secondary use extra measures such as Anonymisation and synthetisation need to be covered.

5. Use interoperable systems:

It is important to ensure that the system for accessing patient data is interoperable and can work with existing systems. This can be achieved through the use of standards such as HL7 or FHIR…

6. Comply with relevant laws and regulations:

It is important to ensure that the system for accessing patient data is compliant with relevant laws and regulations, such as European Health Data Space (EHDS), Health Data Authority (HDA), i-HD and GDPR.

This can be achieved using legal and regulatory experts as well as working with the governments.

7. We might consider decoupling the current bond between data and diagnosis

As there seems to be a “intellectual property issue” with the latter.

8. Supplementing medical data with situational data (e.g. (non-medical) wearables, …)

This will allow a more complete image of the patient and ailments.

Conclusion

A distributed universal Unified Access governing all patient data would allow access across the entire healthcare system unchaining the information that is required to open the doors of the future. When we want to have a healthcare ecosystem based on prevention and minimising stays in hospitals we need to make sure that all elements of our health are available. This means that 1 st and 2 nd line healthcare professionals need information currently stored in silos and undetermined places but also that patient and loved ones can contribute with additional information. Just like a patients’ life doesn’t revolve around an illness data isn’t limited to strict medical observation and data such as from wearables and personal observation by people around the patient.

To be able to unrestricted movement of people around the globe our healthcare data needs to be as easily available as our passport and just as trusted, and if we want this to be true, we better start at the local level but with the end goal in mind!

Plan globally, execute locally!

Do you have inputs to make also an impact with these questions? Do you also face these kind of problems?

What’s your ideations based on these questions? We want to hear from you! Share your expertise and story commenting this post or via the website:

Join the movement and together let’s create #1patient1record4Belgium.

Together we know more and united we stand!

Jan Vekemans

#1patient1record4Belgium