1. Towards Delivering Disease Support Processes for Patient Empowerment Using Mobile Virtual Communities Bert-Jan van Beijnum, Pravin Pawar, Lamia Elloumi and Hermie Hermens Telemedicine Group University of Twente, Enschede, The Netherlands. 25-10-2015 1

2. Outline of the Presentation  Introduction to the BraveHealth Project  Mobile Virtual Communities – Definition and Scope  Existing MVCs for CVD patients – Related Work  Proposed BraveHealth Mobile Virtual Communities (BMVC)  Patient Empowerment Concept and Model  BMVC Specific Organization  BMVC Case-study  Conclusions and Future Work 25-10-2015 2

3. BraveHealth Project Patient Centric Approach for an Integrated, Adaptive, Context-Aware Remote Diagnosis and Management of Cardiovascular Diseases 25-10-2015 3  General Processes: Patient admittance, treatment and custom BraveHealth support  Clinical Processes: Assessment of patient and therapeutic procedures in patient treatment  Disease Support Processes: Aimed at patient empowerment using proposed MVCs

4. A definition of MVC  Definition of Mobile Virtual Community: “a mobile virtual community is a group of people who interact because of a common interest, problem or task and whose members interact independent of time and space”

5. Existing MVCs for CVD Patients – Related Work  Few of existing patient 2.0 social networks/systems  MedHelp, DailyStrength, Healia, PatientsLikeMe, IBM Patient Empowerment System, WellSphere, FaceToFaceHealth….  Following CVD specific facets are addressed  Diet, medication, physical activity, physical exercise, education, disease coping, smoking cessation…  Following CVD specific disease conditions covered  Essential (primary hypertension), Angina pectoris, Acute myocardial infarction, Subsequent myocardial infarction, Heart failure…  Applications/tools available to patients and healthcare professionals  Trackers, posts, articles, health pages, user journals, groups, health blogs, expert answers, encyclopedia, integrated bosignal monitoring & feedback 25-10-2015 5

6. MVC in BraveHealth - BMVC  A group of persons who use ICT mediated interactions to achieve a specific health related goal and who’s members interact anytime, anywhere  The health related problem must be narrowly scoped  Persons in a group can play different roles e.g. nurse, caregiver, fitness coach  Addresses a well defined CVD lifestyle facet (medication, physical activity/exercise, dieting, …)  Offers a specific type of support (informational, instructional, emotional, appraisal / feedback) for patient empowerment

7. Explanation of Patient Empowerment Processes*  Informational support  The provision of content for the patients and carers in order to learn and advice about the heart condition  Instrumental support  Behaviours such as spending time and skills with the patients in order to improve their health condition  Emotional support  provision of trust, empathy, love and caring to the patient  Appraisal support  evaluative feedback that encourages patient to follow healthy lifestyle 25-10-2015 7 * Tardy C. H., Social Support Measurement, American Journal of Community Psychology

8. Proposed Model of Patient Empowerment Using MVC

9. BMVC Specification Organization 9

10. BMVC Case-study - Patient Leo Nidas  Leo Nidas is a chronic CVD patient. His current situation is as follows:  He has problems to comply with taking the prescribed medication at the right time.  L. Nidas is now member of a CVD medication support community  He needs to do physical exercises twice a day and has anxiety problems doing so.  L. Nidas recently joined the physical exercise support community.  He is interested in the latest info and knowledge about his specific CVD condition.  L. Nidas has become a member of the CVD information community.

11. Patient-Centric View of Proposed MVCs 11

12. 25-10-2015 12 Conclusions and Future Work  The proposed BMVCs are patient-centric  Each community has a well defined support scope and addresses a particular CVD lifestyle facet  Each community has related roles, services, services interaction policies and applications  A member participates in multiple communities – depending on required type of support  A community member takes on an appropriate role/s depending on the expertise  The proposed patient empowerment model sets the BMVCs apart from other communities  Presently we are using existing community engines (e.g. ELGG, DOLPHIN, Facebook) for the realization of BMVCs  Our aim is to have custom implementation of all BMVC specific components – Platform management, Template management, Community management & Individual communities.

13. 25-10-2015 13 Acknowledgements