Micro ad-hoc Health Social Networks (uHSN). Design and evaluation of a social-based solution for patient support.

OBJECTIVE

To contribute the design, development, and assessment of a new concept: Micro ad hoc Health Social Networks (uHSN), to create a social-based solution for supporting patients with chronic disease.

DESIGN

After in-depth fieldwork and intensive co-design over a 4-year project following Community-Based Participatory Research (CBPR), this paper contributes a new paradigm of uHSN, defining two interaction areas (the "backstage", the sphere invisible to the final user, where processes that build services take place; and the "onstage", the visible part that includes the patients and relatives), and describes a new transversal concept, i.e., "network spaces segments," to provide timely interaction among all involved profiles and guaranteeing qualitative relationships. This proposal is applicable to any service design project and to all types of work areas; in the present work, it served as a social-based solution for supporting patients with chronic disease in two real-life health scenarios: a Parkinson disease patient association and a Stroke rehabilitation service in a hospital. These two scenarios included the following main features: thematic (related to the specific disease), private, and secure (only for the patient, relatives, healthcare professional, therapist, carer), with defined specific objectives (around patient support), small size (from tens to hundreds of users), ability to integrate innovative services (e.g., connection to hospital information service or to health sensors), supported by local therapeutic associations, and clustered with preconfigured relationships among users based in network groups.

MEASUREMENTS

Using a mixed qualitative and quantitative approach for 6 months, the performance of the uHSN was assessed in the two environments: a hospital rehabilitation unit working with Stroke patients, and a Parkinson disease association providing physiotherapy, occupational therapy, psychological support, speech therapy, and social services. We describe the proposed methods for evaluating the uHSN quantitatively and qualitatively, and how the scientific community can replicate and/or integrate this contribution in its research.

RESULTS

The uHSN overcomes the main limitations of traditional HSNs in the main areas recommended in the literature: privacy, security, transparency, system ecology, Quality of Service (QoS), and technology enhancement. The qualitative and quantitative research demonstrated its viability and replicability in four key points: user acceptance, productivity improvement, QoS enhancement, and fostering of social relations. It also meets the expectation of connecting health and social worlds, supporting distance rehabilitation, improving professionals' efficiency, expanding users' social capital, improving information quality and immediacy, and enhancing perceived peer/social/emotional support. The scientific contributions of the present paper are the first step not only in customizing health solutions that empower patients, their families, and healthcare professionals, but also in transferring this new paradigm to other scientific, professional, and social environments to create new opportunities.