iCARE-PD was built based on social and cultural diversity of its partners, with secured access to existing national research networks and patient associations.

iCARE-PD is made of a wide multidisciplinary team of internationally recognized Parkinson Disease researchers, social scientists, health geographers, health economists, engineers, computer scientists, experts in law/ethics, patient-centred design, and complex interventions.

The iCARE-PD consortium has a matrix-based organization to allow a flexible and efficient structure for knowledge exchange, resource use, and interaction across a wide variety of expertise in iCARE-PD that includes the fields of co-design, health-economy, health geography, Technology Enabled Care (TEC), clinical measure development and care delivery model evaluation. The research teams is organized in Work Packages (WP) and Cross-cutting Groups (CCG). 

[Meet our team by clicking on the pictures]

STUDY COORDINATORS: Nadège Costa (University Hospital of Toulouse, France) and Richard Dodel Philipps (University Germany). 

TEAM MEMBERS: Kednapa Thavorn (University of Ottawa, Canada), Laurent Molinier (University Hospital of Toulouse, France)

Study Overview: We will characterize and define economic barriers of the implementation of iCARE-PD.

Study 1: Identification of health-economic barriers to a novel iCARE-PD care delivery model

Deliverable: A comprehensive characterization of the costs and reimbursed care of different PD care pathways and help to overcome potential economics barriers to the new care model we are shaping in iCARE-PD and secure its affordability and accessibility toPwPs and society.

Study 2: Perform a comprehensive Health Economic evaluation of the clinical care model tested in iCARE-PD. The goal are to: (1) Show the real costs associated with the iCARE-PD model in healthcare payer and societal perspectives; (b) define groups which the new iCARE-PD model is optimal; (c) cost-effectiveness analysis comparing the iCARE-PD delivery model with standard of care.

STUDY COORDINATOR: Eric Crighton (Department of Geography, Environment and Geomatics, University Ottawa, Canada)

TEAM MEMBERS: Michael Sawada (Department of Geography, Environment and Geomatics, University of Ottawa, Canada); Kathleen Wilson (Department of Geography, University of Toronto, Canada)

Study Overview: This study will take a geographic approach to examining patterns of PD/PKS prevalence, healthcare utilization (realized access), and factors that influence healthcare utilization. Methods will involve ecological level spatial analysis using administrative health data, and individual level analysis of survey data.

Study 1: Retrospective, population-based, ecological level study examining geographic patterns of PD/PKM prevalence and healthcare utilization, and diverse socioeconomic, geographic and health services factors that may influence healthcare utilization.

Deliverable: Report on regional differences in PD/PKM prevalence and service access and area level factors that may determine these differences.

Study 2: National web-based survey of PwPs to assess barriers to PD services at the individual level. The survey will be informed by the results of Study 1 and include questions about novel TEC solutions.

Deliverable: Report on a unique individual-level data from multiple national contexts on PD/PKM patient service use/needs, barriers to access and perceptions of novel TEC solutions. 

STUDY COORDINATORS: Angelo Antonini (University of Padova) and Álvaro Sánchez-Ferro (Hm-CINAC)

TEAMS MEMBERS: Mariana Hernández-González Monje (HM-CINAC), Norberto Malpica (LAMBIO), Francisco Javier Vera Olmos (LAMBIO), Giovani Gentile (University of Padova), Timothy Lynch, Joaquim Ferreira, Evžen Růžička, Martin Srp

Study Overview. The Technology Enabled Care (TEC) group will use a novel co-design framework with patients, caregivers, healthcare practitioners (HCPs) to develop an integrated TEC solution that will allow People with Parkinson’s (PwPs) to self-monitor and inform their HCPs more effectively.

Study 1: Define a common set of specifications for the individual technologies developed within the consortium to allow their integration into the final solution.

Study 2: With the support of the Co-design and Ethical-legal groups develop an Integrated digital health technology package (PD virtual coach) validated by the end user (PwPs, care partners and HCPs).

Deliverable. Integrated digital health technology package (PD virtual coach) validated by the end user (PwPs, care partners and HCPs).

STUDY COORDINATOR: Prof. Carsten Eggers (University Hospital Marburg, Germany)

TEAM MEMEBERSChristiane Woopen (CERES Cologne, Germany), Björn Schmitz-Luhn (CERES Cologne, Germany), Franziska Thieken (University Hospital Marburg, Germany)

Study Overview: Quality of Life (QoL) is a broad concept that includes both objective and subjective indicators, such as living conditions, disposable resources and evaluations of the personal life situation. A framework that combines descriptive, evaluative and normative perspectives has not yet been developed for Patients with Parkinson. In iCARE-PD, we will develop a comprehensive PD-specific inventory (CHAPO-PD) based on an existing Quality of life model (CHAPO) in order to approach objective and subjective perspectives in Patients with Parkinson.

Deliverable 1: Bring co-design to the new inventory (seek the views of PwPs on the existing interview structure and input for a PD-specific CHAPO, receiving input from CCG1 co-design)

Deliverable 2: Development of the CHAPO-PD model (including item collection through expert panel, item generation, building of the questionnaire, item reduction, identification of a scoring system)

Deliverable 3: Cross-cultural validation (adapt this outcome measure to other countries/languages)

STUDY COORDINATORS: Sylvie Grosjean (University of Ottawa, Canada) and Luc Bonneville (University of Ottawa, Canada)

TEAM MEMBERS: All lead partners as PD content experts and local co-design collaborators: Laurent Morillon (France), Elke Kalbe, Christiane Woopen (CERES, Germany), Jordi Farre Coma and Anna Sendra-Toset (Universitat Rovira i Virgili, Spain)

Study Overview: Implement a co-design approach to take experiences of PwPs/Care Partners into account in the design process of healthcare solutions and eHealth technologies.

Study 1:

  • To determine what are patients/care partners priorities in terms of care delivery based at home/community.
  • To define the envisioning care delivery model that support both social care and medical care from the perspective of people living with Parkinson.

Deliverable:

  • Provide a shared representation (“Patient Journey Map”) of the current state of care delivery in each country involved in the iCARE-PD project by identifying: (a) key events in the storyline of the PwPs; (b) important touchpoints; and (c) barriers/facilitators to make community linkages, to use healthcare services or community resources.
  • Identify the patients’ trajectory during the course of the disease (based on the Corbin & Strauss Trajectory framework). The trajectory framework provides a structure to analyse the care priorities to be considered for designing a care delivery model based at home/community.

These data will be pivotal to the development of TEC solutions (WP3) and to shape the ultimate iCARE-PD care delivery model.

Study 2: Obtain the input of PwPs/care partners and HCPs about eHealth technologies and the features of future devices. 

STUDY COORDINATORS: Jennifer Chandler (Faculty of Law, University of Ottawa) and Björn Schmitz-Luhn (Ceres, Cologne Center for Ethics, Rights, Economics and Social Sciences of Health, Universität zu Köln)

Study Overview: The main objective of CCG2-Ethical-Legal is to consider the ethical and legal issues related to the forms of technology-enabled care and patient self-management contemplated in the ICARE-PD project.

Study 1: Review of the relevant ethical-legal literature to produce a descriptive catalogue of ethical and legal issues related to TEC and patient self-management.

Study 2: Comparative assessment of medical professional liability issues related to TEC and patient self-management (Germany, Canada).  This will explore the potential legal issues arising from design and use of these forms of delivery of health care.

 

COORDINATORS: Pr. Joaquim Ferreira and Pr. Evzen Ruzikca

Overview of activities: The iCARE-PD has a robust multidisciplinary component with interdisciplinary links between clinical sciences, sociology, technology, the pharmaceutical industry, and government health systems. The Training and Mentoring CCG will provide support to secure iCARE-PD is an excellent learning environment with unparalleled opportunities to obtain and participate in care research programs.