VITO creates Solid-based system for sharing personal health data

Due to the sensitivity of personal health data and regulatory restrictions, opportunities to enhance health-related services and insights cannot be fully realized under current data sharing models. VITO—an independent Flemish research organization—wanted to increase citizen and patient confidence in data-driven research and to unlock the potential of personal health data by giving citizens ownership of their own data. In order to achieve this goal and involve citizens in decisions about the usage of their own personal data, VITO helped create We Are, a platform that provides citizens with personal data vaults. We Are relies on Inrupt’s Enterprise Solid Server to provision citizens a data vault with their own Solid Pod. In building the We Are system, VITO is committed to creating a sustainable scientific ecosystem for personal health data.

Challenge

Allow individuals to control and share their personal health data with third parties

As a first test case for the We Are health data ecosystem, VITO wanted to improve the way Patient-Reported Experience Measure (PREM) questionnaires are administered while also implementing an additional consent layer for patients.

PREM questionnaires are administered to anyone who stays in a hospital. These surveys are typically administered on paper; however, digital questionnaires present a more streamlined patient experience, as patients do not have to navigate through a paper survey to find the questions that apply to them. Additionally, creating a digital version of the PREM questionnaire enabled VITO to provide patients the ability to consent to their data being used. Patients also continue to have access to this data even after the questionnaire is submitted.

Solution

Use Solid Pods to create a platform that securely stores patient health data

In addition to providing the Pod infrastructure through Inrupt’s Enterprise Solid Server, Inrupt worked with VITO to create a Solid-enabled, digitized application of the Patient Record Experience Measure, which served as an initial use case for the We Are health ecosystem.

1. Hospital Employee, left, at a computer, sending a questionnaire to the patient via email.
2. The patient opens the questionnaire on their phone.
3. An example question from the questionnaire: "Would you recommend this hospital to your friends and family?" The options are "Certainly Not", "Probably Not", "Probably" and "Certainly".
4. A double headed arrow between the questionnaire and the We Are employee, that says "Patient approves access to answers from their Pod". Another arrow from the We Are employee to the VIKZ employee, that says, "Shares anonymized answers, with consent."
5. The hospital / regional quality of care institution. An employee sits in front of a computer with graphs and data analysis.

In the Solid-enabled PREM application, a hospital employee first generates a personal questionnaire link for a patient that has recently stayed in the hospital.
The patient receives the questionnaire via email and verifies their name, as well as basic questions concerning their hospital stay.
The patient then completes the questionnaire, which includes a list of general standardized questions used among different hospitals and questions specific to the hospital they stayed in. The answers to this questionnaire are all stored in the patient’s Solid Pod.
Next, the patient is asked if they would like to share their answers to be included in an aggregated, anonymized dataset. If the patient accepts, We Are is granted access to their answers.
We Are then anonymizes the answers and grants access to a hospital or regional quality of care organization. A researcher from that organization then reviews the data in aggregate to draw insights on quality of care across Belgian hospitals.

From the moment the data is created, it is structured as Linked Data, allowing it to be easily reused in other contexts and shared with other applications all with the patient’s consent—from a hospital employee to We Are to a quality of care organization researcher. Additionally, Solid’s use of international data standards and vocabularies eliminates the need for data transformation, improving the consistency and reliability of the data.

The patient can review and edit We Are’s access to their answers at any time through We Are’s user management application. As future We Are applications are developed, patients will continue to use the same user management application, presenting a cohesive user experience across the We Are ecosystem.

By being able to access their own data, citizens are able to take a more active role in their own care and may be more likely to contribute anonymized data to aid in research efforts. As the We Are platform continues to grow, citizens can receive more personalized products and services that are built on the data the citizen provides.

A graphic representing We Are. On the far left is a circle called "Our Values" and within it, "Trust", "Ethics", "Legislation", and "Transparency".
In the middle, there are concentric circles emanating out from each other, with the Citizen in the middle and the Citizen Pod on top. The center is labelled, "Citizen-Centric Approach". The first circle outside the Citizen is "Data Storage". The next circle is labelled, "Functionalities: Data Access & Communication". The next circle is labelled, "Organisational & Data Governance". There is a circle to the left of this that says "Creation and Capture of Personal Health Data" with an arrow in towards "Functionalities: Data Access & Communication". There is an arrow out of "Organisational & Data Governance" that points to "R&D Innovation". There is an arrow from "R&D Innovation" to "Personalised Products & Services", and along that arrow are "Academia", "Civil Society", "Public Authorities", "Industry". The "Personalised Products & Services" has an arrow pointing back to "Functionalities: Data Access & Communication".

Inrupt’s Solid Pods enable We Are’s citizen-centric approach to using personal health data by creating new functionalities related to data access and transparency. With Solid, patients can consent to their aggregated personal health data being used for innovation, and can receive more personalized products and services in return.

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We Are supports a citizen-centric, values-based approach to using personal health data for innovation. Data collected must contribute to improving the health, well-being and quality of life of individuals in their daily lives. We Are is committed to creating a system where:

The citizen can manage their own data
There is clarity at all times about what happens to personal data
The citizen chooses which data (whether or not anonymized) may be used and by whom

These principles align with Inrupt’s Solid technology, which allows users visibility into how their data is used and enables fine-grained access control to user data, allowing users to choose which organizations can use their data and for which purposes.

Solid Pods created on the We Are platform are part of Flanders’ Solid ecosystem, creating even more opportunities for data innovation and services that respond to a citizen’s needs.