mICF project plan accepted at FRDG midyear meeting in London (May 2014)

1. Developing a mobile application for the International Classification for Functioning, Disability and Health
An international collaborative of the Functioning and Disability Reference Group of the World Health Organisation’s Family of International Classifications (WHO-FIC)
mICF: Project Scope & Project Plan Update: 10 June 2014
Complied by: Stefanus Snyman, Werner Mostert, Vincenzo Della Mea, Olaf Kraus de Camargo with the contributions from other FDRG partners.

2. mICF: Project Scope & Project Plan (5 May 1014)
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1 BACKGROUND
Increasingly mobile phone applications are used to collect and provide health information and facilitate decision making. Currently, no mobile applications incorporate the International Classification of Functioning, Disability and Health (ICF), except for emerging prototypes like the ICanFunction Application destined to be used with children and youth (Kraus de Camargo, 2013; Kraus de Camargo, 2012). The ICF is a framework developed by the WHO, documenting information on functioning as dynamic interaction between a patient's health condition, environmental factors and personal factors, facilitating decision-making and continuity of care. ICF highlights the need for a diverse team of service providers, but also represents a paradigm shift in how to approach health and healthcare (see figure 1).
Figure 1. The ICF framework adapted from WHO (2001)
Dubbed the mICF, the aims of this project are to build an international collaborative of ICF specialists, as well as experts in health informatics and information technology to investigate the development of a user-friendly mobile application to
1) assist providers and users of health services in the front line (e.g. patients, parents, health service providers, teachers) to identify a person's problems in terms of the ICF (functional status and contextual information), and
2) to amalgamate ICF-related data centrally.

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It is envisaged that the mICF will
1) ensure accurate and efficient capture of functional status and contextual information,
2) convey information securely between service providers in different service settings,
3) facilitate clinical decision-making by making person-centred data readily available,
4) facilitate administration and reporting through the aggregation of the data and
5) minimise the need for repeat data collection.
At the annual meeting of the Functioning and Disability Reference Group (FDRG) of the World Health Organisation’s Family of International Classifications (WHO-FIC) in 2013, it was agreed to encourage the development of a collaborative to investigate the development of a mobile application for the ICF. Currently 40 collaborators form 17 countries indicated their interest to collaborate in developing the mICF. Anyone interested in joining the collaborative is encouraged to complete an online questionnaire at http://tiny.cc/icfmobile .
During the first year of this three-year project, the requirements for the mICF will be determined by conducting a survey, literature review and two workshops. In the second year the prototype will be developed and field tested, before the end product is launched in 2016. Thereafter the efficacy of mICF will be evaluated regarding the improvement of patient-centred health outcomes, communication across continuum of care, patient satisfaction and cost effectiveness of service delivery.
The envisaged benefits of the mICF would be to:
1. Empower providers and users of health and related services
2. Facilitate universal healthcare
3. Enable continuity of care
4. Capture the interactions between ICF components to facilitate
5. Understanding of the complexity of interactions between health and contextual factors
6. Patient-centred decision-making and goal setting
7. Interprofessional and transprofessional collaborative practice
8. Amalgamate data to help strengthen systems. 2 AIMS, OBJECTIVES AND ACTION STEPS
Figure 2: Visualisation of the mICF Project

4. mICF: Project Scope & Project Plan (5 May 1014)
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The aims of this Collaboration are to investigate the development of a user-friendly mobile application to
1) assist providers and users of services in the front line (e.g. patients, parents, health service providers, teachers) to identify a person's problems in terms of the ICF (functional status and contextual information), (see 2.1) and
2) to amalgamate ICF-related data centrally (see 0).
Table 1: Summary of the aims and objectives AIMS OBJECTIVES AND ACTIVITIES
1. Assist providers and users of services in the front line (e.g. patients, parents, health service providers, teachers) to identify a person's problems in terms of the ICF (functional status and contextual information),
1. Develop the specifications for the mICF to enable programmers to develop the application.
Activities
 Needs requirement survey
 Literature review
 2 Workshops
2. Provide a means for providers and users of health services to collect and transfer ICF-related information to facilitate the continuity of care
Activities
 Developing a mICF
 Testing the prototype
 Refine the prototype and develop the final product
 Test the final product as well as usefulness of algorithms.
2. To investigate the development of a user-friendly mobile application to amalgamate ICF- related data centrally
1. Convey information securely between service
2. Ensure a sustainable and cost-effective platform
3. Facilitate administration and reporting
4. Providing person-centred feedback to inform shared decision-making
The first aim focuses on ensuring accurate and efficient capture of functional status and contextual information to facilitate person-centred decision making and continuity of care, whereas the second aim is to ensure reporting for administrative and research purposes. 2.1 AIM 1 (2014-2015)
Aim 1: To investigate the development of a user-friendly mobile application to assist providers and users of health services in the front line (e.g. patients, healthcare providers) to identify a person's problems in terms of the ICF (functional status and contextual information)
The first aim will be reached by the following objectives between May 2014 and February 2015:
2.1.1 OBJECTIVE 1:
The first objective is to develop the specifications for the mICF to enable programmers to develop the application. It includes the following activities:
1) Needs requirement survey for the mICF will be conducted among
a) Service providers (e.g. community care workers, community rehabilitation workers, primary health care nurses; teachers, social workers, other health professionals), users of health services (e.g. patients, parents), and
b) Administrators (e.g. academics, statisticians). This will be conducted by the collaborators in their countries (Results available: September 2014). The survey will be available online in various languages.

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 ACTION STEPS BY WHO (Lead: Olaf Kraus de Camargo) BY WHEN

Finalise English Questionnaire & write cover letter
Stefanus Snyman; Olaf Kraus de Camargo; Catherine Sykes
2014-06-10

Final draft back from comment
17 June (feedback received)
2014-06-17

Launch English survey online
Stefanus Snyman; Olaf Kraus de Camargo; Catherine Sykes
2014-06-20

Translate to different languages
 Luis Salvador-Carulla: Spanish
 Marie Cuenot: French
 Vincenzo Della Mea: Italian
 Olaf Kraus De Camargo: German & Portuguese
 Haejung Lee: Korean
 Jaana Paltamaa: Finnish
 Stefanus Snyman: Afrikaans
 Sirinart Tongsiri: Thai
 Coen Van Gool: Dutch
2014-07-07

Launch survey in other languages
Stefanus Snyman; Olaf Kraus de Camargo and language representatives
2014-07-15

Submit abstract for WHO-FIC
Olaf Kraus de Camargo; Stefanus Snyman
2014-07-15

Survey closes
Olaf Kraus de Camargo
2014-08-29

Analysis data completed
Olaf Kraus de Margo; Stefanus Snyman
2014-09-03

Submit poster for Barcelona
Olaf Kraus de Margo; Stefanus Snyman
2014-09-05

Submit report for mICF workshop
Olaf Kraus de Margo
2014-10-09
2) Literature review to determine the characteristics of a successful mHealth applications for front line service providers (Results available: September 2013).
Four components of the literature review has been suggested:
a) Relevant ICF articles and documentation of how ICF is used (especially by front line service providers)
b) Current ICF electronic systems and other related ICT systems (e.g. tabling strengths and limitations of each tool: FABER, eFROHM, iCAN, BigMove, ICF machine, Revalidatie EPD, St Louis Uni (http://www.slu.edu/nl-rel-comm-sci-dod-grant-829)).
c) Characteristics of effective mHealth applications that enable decision-making on service level (also liaising with mHealth Alliance)
d) Building on the needs requirement survey (see above) a review will be done of how CCWs, CBR workers and other front line service providers effectively use mobile applications (e.g. linking with experience from South Africa, Sierra Leone, Handicap International)
A report of the literature review will be drafted for the Barcelona meeting. This report together with the results of needs requirement survey will form the basis for determining the specifications of the mICF. A peer-reviewed article will be the results of this first phase of the project.

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All the articles, websites, documents or multimedia identified during the literature review will be placed in a Research Repository (click here) which will be available to collaborators and researchers. This can tie in with other FDRG literature activities.  ACTION STEPS BY WHO (Lead: Patricia Saleeby) BY WHEN

Create Dropbox for references
Stefanus Snyman
2014-05-05

Determine scope of mICF literature study
Patricia Saleeby (convenor), Jaana Paltamaa, Coen van Gool, Vincenzo Della Mea, Olaf Kraus de Camargo, Stefanus Snyman (?& mHealth Alliance)
2014-05-31

Finalise literature review team
Patricia Saleeby
2014-05-31

Write protocol for article (Literature review and survey)
Coen van Gool
2014-06-30

Submit abstract for Barcelona meeting
Patricia Saleeby & Stefanus Snyman
2014-07-15

Complete literature review
Patricia Saleeby (convenor)
2014-08-31

Submit poster for Barcelona
Patricia Saleeby (convenor)
2014-09-05

Present findings at Barcelona meetings
Patricia Saleeby (convenor)
2014-10-09

Finish article
Review team
2014-11-30
3) Workshop 1 between the Collaborators to define the specifications for the mICF as informed by the survey and literature review (9-10 October 2014, Barcelona, Spain)  ACTION STEPS BY WHO (Lead: Stefanus Snyman) BY WHEN

Secure free venue in Barcelona 2 days prior to start of WHO-FIC meetings
Stefanus Snyman
2014-05-31

Determine agenda
Stefanus Snyman & Vincenzo Della Mea
2014-06-10

Send invitations to mICF partners
Stefanus Snyman
2014-06-10

Find logistics organiser for meeting in Spain
Stefanus Snyman
2014-06-10
4) The Collaborators involved in Workshop 1 will report back to the Annual World Health WHO-FIC Meeting (10-17 October 2014, Barcelona, Spain) to gain further support and to liaise with other interested international collaborators.  ACTION STEPS BY WHO (Lead: Stefanus Snyman) BY WHEN

Report on needs requirement survey (and poster)
Olaf Kraus de Camargo
2014-10-09

mICF Literature review report (and poster)
Patricia Saleeby
2014-10-09

Updated project plan and specifications
Stefanus Snyman
2014-10-11

Funding proposal
Stefanus Snyman
2014-10-09

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5) During Workshop 2 IT specialists will finalise the specifications for the (1) mICF mobile application, (2) mICF database, and (3) mICF web platform for institutional and government users. The workshop will be hosted by Stellenbosch University, South Africa. (Proposed dates: 19 – 24 January 2015).  ACTION STEPS BY WHO (Lead: Stefanus Snyman) BY WHEN

Secure venue
Stefanus Snyman & Cornie Scheffler
2014-07-15
2.1.1.1 EXPECTED OUTPUTS IN REACHING THIS OBJECTIVE:
1) An article on the findings of literature review and survey will be published in a peer-reviewed journal. The uniqueness of the needs requirement survey and literature review is not only in terms of the ICF, but also in the design and interface of a user-friendly mobile application to inform decision making.
2) Report to inform an evidence-based benchmark for the specifications of the mICF.
3) A repository (adding to current FDRG initiatives) of articles, websites, documents, multimedia, etc., identified during the literature review.
4) Presenting of research findings at conferences.
5) Final project plan and specifications that IT experts can use to develop a mICF prototype.
6) Other international partners committing to contribute to the development of the mICF.
7) Detailed workshop agenda for IT workshop in January 2015 in Stellenbosch, South Africa.
8) Grant applications and funding
2.1.2 OBJECTIVE 2:
The second objective is to provide a means for providers and users of health services to collect and transfer ICF-related information to facilitate the continuity of care (March 2015 - February 2016). This objective will be reached by the following activities:
1) Developing a mICF prototype mobile application on an Android platform
2) Testing the prototype on frontline users (both service users & service providers) to evaluate usability and user acceptance of the mICF.
3) Refine the prototype and develop the final product
4) Test the final product as well as usefulness of algorithms.

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2.2 AIM 2 (2016)
Aim 2: To investigate the development of a user-friendly mobile application to amalgamate ICF-related data centrally (March 2016 - December 2016).
The “amalgamation process” is the key issue to the success of the mICF. It is therefore important for a technical team to specify it in detail at the Barcelona meeting.  ACTION STEPS BY WHO (Lead: Coen van Gool) BY WHEN

Ensure relevant technical / big data experts attend workshops in Barcelona and Stellenbosch (e.g. Carolyn McGregor)
Coen van Gool, Vincenzo della Mea, Cornie Scheffler, Olaf Kraus de Camargo
2014-07-31

Compile specifications documentation after Barcelona workshop
Technical team
2014-10-31
2.2.1 OBJECTIVE 1
The first objective in reaching this aim is to be able to convey information securely between service providers in different service settings consistent with ethical and privacy principles in relation to data sharing, e.g. among clinicians.
Activity: Survey current security standards as applied in communication between healthcare information systems (e.g., by analysing HL7 and IHE integration profiles), with the specific mICF application in minf. Survey should also be made in relation with local regulation on privacy and ethics to investigate compliance, so a preliminary survey on relevant on all the collaborators laws will be carried out.
2.2.2 OBJECTIVE 2
The second objective, to ensure a sustainable and cost-effective platform minimising the need for repeat data collection, will be reached by analysing available health information systems of the Collaborators.
Activity: In order to minimise data replication and thus reduce the so-called "data silos" effect, an analysis of available health information systems in all the Collaborating countries will be carried out, aimed at identifying i) possible sources of needed data that are already been collected in some other systems (e.g., clinical records) and ii) possible destinations of data collected by mICF (e.g., disability certification systems). Once identified, a proposal regarding interoperability could be carried out, letting its implementation to some further specific project.
2.2.3 OBJECTIVE 3
The third objective is to facilitate administration and reporting through data aggregation and data analysis.
Activity: Health data visualization is a crucial issue, and ICF does not make things easier. ICF data constitute a rich person profile that may partially change in time, in particular when the subject is involved in some process, like care, rehabilitation, school, etc. Starting from expert panel opinions on the needs, a dashboard of tools for aggregating and visualizing ICF profiles will be provided on the server hosted part of the application. This will be designed having in mind a web-based system with responsive pages, in order to be viewable on computers as well as mobile devices of any kind.

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2.2.4 OBJECTIVE 4
The fourth objective is to empower service providers and users by providing person-centred feedback to inform shared decision-making through the development of a recommender system based on analytic algorithms of the database with different functional profiles.
Activity: As a last activity, a visionary exploration aimed at decision support tools will be started, to identify possible rules that link together data coming from ICF profiles and possibly from other information systems, in order to inform caregivers in their daily activity. In particular, already collected data might be used to suggest further observations to be made, when some gap is identified or when some available ICF qualifier seems to suggest further investigations in a specific direction. As a possible example, issues evidential on the Activities and Participation component might trigger inquiries on Functions and Body Structures that could be relevant for the specific activities. In order to carry out the task in the best possible way, a set of available ICF profiles would help. These may come from previous research activities of the partners, or be collected during the present project. Either way, an analysis of such data using some data mining tool or some classification tool like Weka might help to recognize candidate rules. 3 TIMELINE
Figure 1. Proposed timeline for total project
Table 1. The proposed activities for 2014/15
Activity
Period
Venue
Leads
Stefanus Snyman
Needs requirement survey
May-Sept 2014
Collaborating countries
Olaf Kraus de Camargo
Literature review
May-Sept 2014
Virtual
Patricia Saleeby
Workshop 1
9-10 Oct 2014
Barcelona, Spain
Stefanus Snyman & Vincenzo Della Mea
Feedback WHO-FIC
11-17 Oct 2014
Barcelona, Spain
Stefanus Snyman
Workshop 2
19-24 January 2015).
Stellenbosch, South Africa
Stefanus Snyman
2014
•Determine the requirements for the mICF (technical and subject specific)
2015
•Developed prototype and field tests
2016
•Launch of the end product

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4 RESOURCES 4.1 RESOURCES AVAILABLE
4.1.1 CURRENT COLLABORATORS
Collaborators can sign up by completing the survey: http://tiny.cc/icfmobile
Surname
First Name
Country
1. Anderson
Jake
Switzerland
2. Anttila
Heidi
Finland
3. Bhattal
Navreet
Australia
4. Carvell
Karen
Canada
5. Celik
Can
Switzerland
6. Cho
Dae Bong
Korea
7. Cuenot
Marie
France
8. Della Mea
Vincenzo
Italy
9. Dewan
Neha
Canada
10. Ferreira
Luana
Brazil
11. Frattura
Lucilla
Italy
12. Goliath
Charlyn
South Africa
13. Hanmer
Lyn
South Africa
14. Iten
Nicole
Canada
15. Jelsma
Jennifer
South Africa
16. Jindal
Pranay
Canada
17. Khalili
Hossein
Canada
18. Kraus De Camargo
Olaf
Canada
19. Lee
Haejung
Korea
20. Leonardi
Matilde
Italy
21. Lopes
Sónia
Portugal
22. Madden
Ros
Australia
23. Maribo
Thomas
Denmark
24. Martins
Anabela
Portugal
25. Martinuzzi
Andrea
Italy
26. Miller
Janice
Canada
27. Mostert
Werner
South Africa
28. Paltamaa
Jaana
Finland
29. Pretis
Manfred
Austria
30. Salvador-Carulla
Luis
Australia
31. Scheffer
Cornie
South Africa
32. Simoncello
Andrea
Italy
33. Snyman
Stefanus
South Africa
34. Suvapan
Daranee
Thailand
35. Sykes
Catherine
UK
36. Tongsiri
Sirinart
Thailand
37. Valerius
Joanne
USA

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38. Van Gool
Coen
Netherlands
39. Vuattolo
Omar
Italy
40. Wöbke
Nils
Germany
4.1.2 COUNTRY REPRESENTATION OF COLLABORATORS
1. Australia
3
2. Austria
1
3. Brazil
1
4. Canada
7
5. Denmark
1
6. Finland
2
7. France
1
8. Germany
1
9. Italy
6
10. Korea
2
11. Netherlands
1
12. Portugal
2
13. South Africa
6
14. Switzerland
2
15. Thailand
2
16. United Kingdom
1
17. United States
1
4.1.3 EQUIPMENT AVAILABLE:
a) Computing equipment: web server of the Medical Informatics, Telemedicine and eHealth Lab with Cpu Intel Core i7 3770 3,4 Ghz Ivy Bridge LGA1155 16 GB DDR-3 1600 MHZ and 2 HD 2 TB SEAGATE, with Ubuntu Linux OS (usage: 10%).
b) Computing equipment: mobile devices of the Context-Aware Mobile Systems Lab, including Android devices, iPhone, iPad (usage: 20%).
c) Rooms for meetings foreseen in the project.
4.1.4 FINANCIAL RESOURCES AVAILABLE
Currently no funds is available. 4.2 RESOURCES NEEDED AND GRANT APPLICATIONS  ACTION STEPS BY WHO (Lead: Coen van Gool) BY WHEN

Budget to be determined in Barcelona
Stefanus Snyman
2014-10-11

Compile grant proposal writing team and work out plan of action
Stefanus Snyman
2014-07-31 5 MODE OF COLLABORATION
Most collaborators are known to each other through the work of the FDRG and other WHO-FIC committees.. Our proposed mode of co-operation is regular Skype conferences, working on a shared Google drive and meeting annually at the WHO-FIC meetings for a week.
The nature of the collaboration will be a consensus-based partnership embracing trust and mutual respect.

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During the next three years a series of workshops will be hosted to work through the various activities as envisaged in the proposed plan. The current collaborators have the following expertise between themselves:
1) Developing the ICF, ICF-CY and specific core sets.
2) Contributing in the developing an ICF ontology.
3) Collecting and analysing ICF related data.
4) Using of the ICF in clinical decision making and goal setting (health, social work and education)
5) Engaging with community care and community rehabilitation workers, as well as other service providers on the front line of service delivery, with a focus on continuity of care.
6) Developing electronic applications for the ICF, e.g. the ICF Machine, FABER, eFROHM and the conceptualisation of the iCAN mobile application. These initiatives will inform the development of the mICF.
7) Researching the application of ICF in various settings
8) Developing eHealth and mHealth applications for primary healthcare workers
9) Writing grant proposals
10) Project management 6 SOCIAL BENEFITS
The mICF will provide a means to collect and transfer ICF related information. This will allow for better dissemination of information to users and providers of services in all settings. Service users will have improved access to health information and services. It will further improve disability surveillance, collection of disability related data and management of user records, thereby improving quality and continuity of care and assisting in preventing disability and promoting health. The mICF will enable remote treatment and monitoring by allowing to shift the focus of treatment from hospital and community care setting to home settings thereby reducing costs of hospitalisation and providing access to health care resources remotely. It thus can be argued that the mICF can empower patients with information and motivation to improve lifestyle and reduce the threat of chronic diseases that could lead to disability. The mICF could be used as a tool to assist with patient education, awareness and behavioural changes. Information could be accessed on mobile devices assisting patients in making informed choices for improved health. It could also be used as a tool to motivate patients. This application could be used as a means for peer support amongst patients. The mICF could also add value to interprofessional collaborative practice and training of health care workers. Health care workers will have immediate access to information about patients but also access to information that will assist evidence based informed decision making. It will be able to provide education material to healthcare workers in remote areas to ensure easy access to up-to-date information 7 REFERENCES
Bhattal, N. 2010. Evaluation of back-end usability of an electronic data capture tool on functioning, disability and health. Sydney: University of Sydney.
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Dufour SP & Lucy SD. 2010. Situating Primary Healthcare within the International Classification of Functioning, Disability and Health: Enabling the Canadian Family Health Team Initiative. Journal of Interprofessional Care, 24(6), 666-677.

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Fiordelli M, Diviani N & Schulz PJ. 2013. Mapping mHealth research: a decade of evolution. J Med Internet Res, 5(5):e95.
Frattura L, Simoncello A, Bassi G, Soranzio A, Terreni S & Sbroiavacca F. 2012. The FBE development project: toward flexible electronic standards-based bio-psychosocial individual records. Stud Health Technol Inform, 180:651-5.
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