The videos below demonstrate the features of the software prototype interface developed by Arjuna Technologies and Open Lab for the SILVER project in 2017-2019, which show how Early Help support workers could access, with family consent, the health data for adult individuals in families they provide support for, in order to improve the quality of the support they offer. The data accessed will be a subset of the information GPs enter in to their EMIS database.
1. Creating and Editing Cases(Families)
In this video we see how a case is stored in the system. Typically a case ID would correspond to the adults around a specific child.(The system is not designed for accessing health data of under 18s). Each adult individual is entered by(as a minimum) surname, gender and date of birth. An NHS number is required for setting of consent and viewing of health data. This can be entered directly if known, or looked up from the details such as birthdate or postcode. Each family member can have a text memo against them to record their relationship to the key child. Family members can be removed from the family, for example in the case of death, estrangement or divorce. New members can be added if they become involved in the child’s care.
In the following video, you can see how consent is recorded, using a specific case ID, on behalf of each family member, by the support worker. A consent statement is shown, which support workers will share with family members in writing or verbally. Once consent is obtained, the support worker has their own agreement text to read, and when they are ready they can record - and later revoke - consent on behalf of the family member. All consent changes and usages of consent are recorded along with staff member name in a consent history, which can be inspected. If a family member is consented for multiple cases, this is highlighted to the user. SILVER consent for any case is sufficient to allow the data to be viewed - but all data views are logged in the history as an instance of using that person’s consent - this provides full accountability.
3. Viewing and Exploring Health Data of Family Members
In the following video, you can see an individual’s health data explored visually as a timeline as well as in a reverse-chronological event log. The video demonstrates the various filter controls available.
Connected Health Cities funded the SILVER Project.
Data Source
The system retrieves data from the Medical Information Gateway(MIG) using services provided by Healthcare Gateway https://healthcaregateway.co.uk/. All data received currently is fake/test data about fictional patients(which is why it is sometimes unrealistic).
The back end is developed in Java and uses the following technologies: Apache HTTP Server, MongoDB, PostgreSQL, Wildfly and Keycloak. The development version is hosted by Arjuna. AIMES https://www.aimes.uk/ are providing hosting which may be used for a future live version. For access to the backend code, which is not open source, please contact Arjuna.
System Status
The system is a fully functional prototype. All features work with test data. Login features are simulated. With additional development work it can be rolled out as a live system usable by councils’ own support workers.
Please contact the PI and/or Arjuna for more information.
User Stories / Feature Specification
The linked document provides an overview of the features available via the front end prototype interface: http://bit.ly/silver-spec
References & Publications
The design of the system is primarily informed by the qualitative research conducted on behalf of the SILVER project by Debbie Smart, Kat Jackson and Liam Spencer at the Institute of Health & Society and Alex Bowyer and Kyle Montague at Open Lab.
The following papers describe additional work that has, in part, contributed to the design of this system:
Understanding the Family Perspective on the Storage, Sharing and Handling of Family Civic Data - Bowyer, A; Montague, K; Wheater, S; McGovern, R; Lingam, R; Balaam, M
Human-Data Interaction in the Context of Care: Co-designing Family Civic Data Interfaces and Practices - Bowyer, A; Wilson, R; Wheater, S; Snape, M; Montague, K
Demo Screencasts / Showcase
Introduction
1. Creating and Editing Cases (Families)
2. Recording, Revoking and Using Consent
3. Viewing and Exploring Health Data of Family Members
Contacts, Credits and Technical Details