Is patient access to healthcare data (financially) feasible?

More and more patients want to have access to their own health information. The idea is that insight into this data, from blood test results to correspondence with their doctors, will give them more control over their own health.

  • Policy makers
  • Patient journey

While healthcare providers are legally obliged to provide this data, it is still very fragmented and difficult to share. It’s therefore not yet possible for patients to get a complete overview of care data from all their different healthcare providers. Gupta was asked whether it would be possible to achieve this, and how it could be funded.
Ideally, patients would have all of their health-related data a single place that they can control: their personal health record (PHR). That way, you don’t need a separate login for each healthcare provider to view or update your care details. The MedMij program aims to establish rules and regulations which allow healthcare providers to clearly and safely share data with patients through a PHR. It should ensure secure data transfer and make it possible to combine and exchange data from different healthcare providers.

Not a sure thing

The emergence of PHRs within the rules and regulations of MedMij should not be taken for granted. Various parties, including healthcare providers and platform developers have to make major investments to create PHRs and exchange data. For these parties, it’s important to have insight into the added value of PHRs over the short and long term. Funding is also needed to encourage these parties to disclose data and develop PHRs that are meaningful for patients.

Cost-benefit analysis

As a first step, Gupta set up a cost-benefit analysis. We started by calculating the costs related to large-scale data disclosure, as well as the costs of developing PHRs. Next, we looked at the potential benefits that PHRs could offer. Our analysis revealed that the benefits were far greater than the costs, and it was therefore useful to invest in PHRs. These benefits, however, are associated with different parties than the costs. That’s why financial incentives are necessary to stimulate the parties that need to cover the costs. As a follow-up to the cost-benefit analysis, we developed different funding models which provide the right incentives to create PHRs.

Funding models

By clarifying the costs and benefits of PHRs and which parties they belong to, the various parties in the field could better define which role they should take. The funding models we developed pointed to sustainable financing options that could offer healthcare providers and PHR developers the necessary confidence to invest. Developing the models also revealed a number of fundamental questions which have not been decided on yet. Therefore, at the moment, project funding is being used to get the first PHRs off the ground at a small scale. In parallel, MedMij is working on developing the desired sustainable financing.

Img Taco Houwert

Taco Houwert's experience

It’s fantastic to be able to contribute to the development of PHRs”

"The social relevance of this project was enormous. It’s fantastic to be able to contribute to the development of PHRs that will soon give patients wide-spread and secure access to their own health data. It will give them the ability to gain more control over their own health and healthcare. It was and still is a complex job to align all the parties who need to be involved in PHRs and to achieve sustainable funding. But the challenge and complexity only made this project more fascinating."