A prototype of a patient-driven ICF-based assessment tool is being developed for persons with severe disabilities so that they can self-report their life situation.
A Finnish team is developing the first mICF proof of concept in their “Feasibility Study of a Patient-driven Mobile ICF-based ICanFunction Assessment Tool (mICF)”. This one-year project (2016-2017) aims to design and develop a first prototype (POC, Proof of Concept) of the mICF for person-centered assessment of functioning based on ICF.
Expected benefits for service user are easier self-assessment and clearer communication with health care professionals. For professionals mICF can provide an easy and quick summary of the service user’s life situation. The solution is based on the ICF and a new National Institute for Health and Welfare (THL) information model on functioning, which allows structured documentation of patient data regarding functioning and environmental factors. We expect that, if connected into health and social care organisations using national interoperability standards for health information systems, the organisations could in future benefit from reduced work time in documentation, and from a possibility to transfer information to service plan and other systems.
The first prototype was designed with users
First, between February and August 2016, we designed a first prototype of the mICF for phone and tablets. This was done using service design methodology in iterative and agile workshops with end users, both adults and children. Adults with severe disabilities, such as brain injury and spinal cord injury participated in a series of workshops in Validia Rehabilitation and Validia College. Workshops with children with complex communication disabilities were held in Valteri School. In the user workshops we used open ended questions to ask the users for their needs and habits on how they use digital devices. Paper and graphical mock ups were used to investigate various ideas in iterative cycles. After each user workshop, the user feedback was used to modify the mock ups to the next testing round with new users. The user needs are illustrated in persona stories and user paths, separately for adults and children.
Based on the user feedback and the ICF, the prototype content was designed to include both user needs and relevant topics about functioning issues and environmental factors to be connected to these needs. The needs and topics are expressed in natural language in the frontend that is shown for the user, but as ICF categories in the backend. For the content development, modification and presentation, we developed a FunctionMapper that can link user needs, natural language and instruments to the ICF. FunctionMapper is based on the THL Term Editor software tool, developed for editing and publishing information structures, ontologies and terminologies.
Many users expressed that they want to provide reliable and valid information, so that the health professionals would better believe their story. For these reasons, also a valid and reliable patient-reported outcome measures will be added to the tool. The PROMIS (Patient Reported Outcomes Measurement Information System) is a suitable generic tool for this purpose. In this project, however, only one PROMIS instrument, the Physical Function for adults and Mobility for children, can be utilized in the tool, as these are the first PROMIS measures that could be translated into Finnish in this project.
Learn more about PROMIS www.healthmeasures.net
How does the tool work in the front end?
The prototype is currently being coded and the first versions are being tested for errors in the project team.
We aim for a simple and easy navigation and understandable content. After downloading the tool from Playstore or App store and registration, the users are first asked to choose what needs or other important issues they want to tell to social or health professionals. Next, they are asked to describe their current situation regarding functioning and environmental factors by choosing relevant topics from a list that opens up from the selected needs. They can describe each topic by answering to a simple question or promt, by free text or by adding a photo. Then the tool lists all the needs and topics that the user has chosen and described, and provides profile based on the answers to the simple questions. The user can go back and change his or her description of any topic. Users can choose whether they want to send all the topics or just some of them. Then the user can make a pdf of the output, and use it as wished, send or print, as the prototype is not connected to any system, as yet.
Feasibility testing with users is going to be carried out in autumn 2016
In the second phase (08/2016-01/2017) the prototype will be evaluated for feasibility and analyses conducted (Work package 3). In the feasibility testing the participants are going to use the prototype for two weeks before going to social or health care services. After that they are going to share their self-assesment and functioning profiles provided by the prototype to the professional. The aim is to imitate a real life situation, gain information of the quality of the data that can be collected with the ICan Function App and collect data of user profiles. The participants will be recruited from the LYHTY (Functioning and challenges in equality and accessibility among people with short stature) study, Validia Rehabilitation, Siun Sote customers and students of Valteri School. The participant’s experience of using the prototype will be collected in real situations in which the prototype is being used and by interviews in focus groups and individually. Moreover, the data collected with ICan Function app will be merged with the data of LYHTY study. The quality of the functioning data, the system and the service are going to be analyzed individually and by using triangulation.
This project is led by National Institute for Health and Welfare (THL), and conducted together with JAMK University of Applied Sciences (JAMK) and Finnish Association of People with Physical Disabilities (FPD). In addition, members from the International mICF Partnership, Valteri School and Siun sote participate the study. The project is funded by Social Insurance Institution (KELA).
The results of the project will be published in Kela report, articles and social media after the termination of the project (February 2017). Moreover the results will be reported to World Health Organization (WHO), since the study is a part of the International mICF Partnership work plan.
- Heidi Anttila firstname.lastname@example.org (project leader)
- Sinikka Hiekkala email@example.com (LYHTY project leader) http://www.invalidiliitto.fi/portal/fi/tutkimus/hankkeet/lyhty_-_lyhytkasvuisten_toimintakyky_ja_esteettomyyden_haasteet/
- Jaana Paltamaa firstname.lastname@example.org
- Petteri Weckström email@example.com
- Project pages: www.thl.fi/en/mICF
- Innovillage (Finnish): https://www.innokyla.fi/web/hanke2685219