This use case proposes a visionary application of the Yellow Button, allowing citizens to choose to share data directly with public health authorities to support specific public health initiatives. Long COVID, for example, is a condition that may be caused by a combination of different factors, and extensive research is still needed to better understand what determines its onset and severity. The disease refers to a wide range of symptoms and conditions that some people experience four or more weeks after an initial infection with the SARS-CoV-2 virus. Due to its broad and evolving definition, it is often undiagnosed. As a result, many patients suffer from symptoms but do not receive adequate support for managing or identifying the condition.
These patients not only need proper care but could also serve as valuable sources of information to help generate new knowledge about the disease. Thanks to the European EHRxF, existing national and international guidelines on Long COVID could be used to automatically identify potential cases based on data available in their electronic health records. These individuals could then be informed about the opportunity to participate in public health programs that investigate various aspects of Long COVID, with the aim of improving understanding of the condition. Patients who choose to participate could be enabled to directly provide the necessary information to public health authorities through the Yellow Button.
Document Version: V1.0
Responsible Party: xShare WP4
Source:
As-Is Situation
Long COVID research is ongoing, with studies exploring various aspects of the condition, including symptom profiles, potential causes, and treatment options. Many cases of long COVID are not diagnosed due to the vast range of symptoms and conditions that it might involve.
Currently available products/services and its vendors
EHR
Which health-related standard does your organisation uses and its alignment to the EEHRxF?
EEHRxF
Actors/Users and their Roles
| Patient | Patients may receive an invitation to join Long COVID study programs based on their symptoms. If they choose to participate, they can use the Yellow Button to share their data with public health authorities. |
| Health Professional treating the patient | Receive notification about their patients being possible long COVID cases based on their EHR data |
| Public Health authority | Receives data from all possible long COVID patients to improve the knowledge around the disease |
User Perspective
Patients receive an invitation to join a study group to develop new knowledge around long COVID by sharing their health information.
Patients who decide to participate can use the Yellow Button to share their data.
System Perspective
The system identifies eligible patients based on the available national and international guidelines
Health Information Domain(s) – HIDs:
- Patient Summary
Scenarios for the xShare Yellow Button
| HIDs | xShare Yellow Button basic functionality | Maturity | |||
| Download | One-time share | Linked options | Start TRL | End TRL | |
| Patient Summary | x | 0 | |||
xShare Yellow Button
Sharing of data with public health authorities conducting specific studies
National/regional strategy
Collect information directly from patients for PH purposes.
Strategy towards EHDS
Empower patients to be an active part of the ecosystem of health data
Business Goals/Benefits and KPIs
Provide useful information on Long COVID for Public Health programs focusing on creating new knowledge around the disease
Support patients and physicians in the diagnosis and management of long COVID
KPIs
- Number of persons that have pressed the xShare Yellow Button to share their data
- Number of persons that join the initiative
- Number of new diagnoses of Long COVID
Application
Yellow button and EHR
Data Preconditions
Data collected according to the EEHRxF
System Preconditions
Compliance to EEHRxF, use of an algorithm for detecting Long COVID based on EHR data
User Preconditions
Patients can directly support the development of new knowledge around Long COVID.
Treating physicians can be supported in the identification of long COVID cases.
Trigger
Users with a long COVID symptoms, patients with a diagnosis of long COVID
Challenges/Limitations
- Mental health data which would be relevant for the study of Long COVID are not yet included in EEHRxF
- GDPR issues
- Ethics approval issues
Involved stakeholders in the BUC definition
Charité, EHTEL, Sciensano
Application of pseudonymisation filters
Yes – Secondary data use.
Basic Workflow
- A patients suffering fatigue, headaches, brain fog and tremor without a specific diagnosis receives an invitation to take part to a Long COVID study program.
- The treating physician receives a notification that, based on the national and international guidelines his/her patient is a possible Long COVID case.
- The physician, after further studying the case, decides to diagnose it as long COVID.
- The patient receives appropriate treatment and decides to participate in the specific proposed long COVID program.
- The patient contributes to the development of new knowledge around the disease by sharing his/her data with the public health authority via the Yellow Button
