Author:

Abstract

Introduction

Virtual Communities of Practices (VCoP) offer participants the possibility to interact with each other, identify and apply the tools and knowledge models necessary for the empowerment of patients. The aim of this project is to co-design a vCoP for the empowerment of people with coronary heart disease (CHD) based on their needs and preferences, with the active participation of CHD patients and professionals from primary/specialized care.

Theory/Methods

We used the experience-based design approach in two phases: a) Exploratory: qualitative assessment of the experience of people with CHD and healthcare professionals. Participants were involved in the proposed common aim and main needs for empowerment were explored in terms of type of support and content. An initial face-to-face discussion group (listening lab) was held with patients and professionals in each of the included Spanish region (Canary Islands, Catalonia, Madrid), using visual and mapping techniques. After, they participated in an online workshop to detect additional needs; b) vCoP design and development: we organized a participatory workshop of people with CHD to capture ideas for the design and development of the vCoP. We explored the preferred type of training materials, educational methodology and self-management. Design and content development continued online.

Results

25 people with CHD from 3 different Spanish regions (Canary Islands-8, Catalonia-6, Madrid-11) from diagnosis and 9 health professionals participated in the co-design of the vCoP.

Exploratory  phase: experiences, barriers and needs for empowerment in CHD were divided in three stages that built the trajectory of care for the condition. This stages were: 1) Diagnosis; 2) Post-diagnosis; 3) Long term care. Experience elicitation facilitated the design of a tool, Patient Journey Map.

Development phase, patients with CHD prioritized needs and barriers to be addressed by the vCoP for each stage of the trajectory of care and developed ideas for the content of the vCoP.

Discussions

Both people with CHD and healthcare professionals made contributions to the development of the trajectory of care. People with CHD were able to identify more diverse and specific needs and barriers regarding empowerment and the barriers hindering it. They were able to provide a concrete and holistic perspective. Professionals were able to clarify the clinical path including the available treatments and care gaps. 

Conclusions

The trajectory of care of people with CHD shows specific needs and barriers for empowerment for the diagnosis, post-diagnosis and long term care stages.

Lessons learned

Patient Journey Maps can be adapted to co-design a vCoP. These tools help to easily share and co-produce knowledge. The co-design process helped decentralizing knowledge, creating a shared perspective avoiding hierarchies.

Limitations

Maximum variation of the sample was not achievable. A limited number of women with CHD (8) participated and their views and experiences were underrepresented. All participants, except one, had experienced a myocardial infarction so alternative experiences were not included.

Suggestions for future research

This research is part of a wider project (e-mpoderados) which main aim is to evaluate the effectiveness and cost-effectiveness of the vCoP in the improvement of patients with CHD’s activation.