Objective: To contribute the design, development , and assessment of a new concept: Micro ad hoc Health Social N etworks (uHSN) , to create a social -based solution for support ing 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 vi sible part that includes the patients and relatives), and des cribes 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 support ing 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, relative s, 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 association s, 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 S troke patients , and a Parkinson disease association providing physiotherapy, occupational therapy, psychological support, speech therapy , and social services. We describe the proposed methods for evaluat ing 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, Q uality 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 expect ation of connecting health and social worlds, support ing distance rehabilitation, improving professionals’ efficiency, expanding users’ social capital, improv ing 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 pa radigm to other scientific, professional , and social environments to create new opportunities. preprint · micro ad- hoc Health Social Networks (u HSN ): design and evaluation of a social -based solution for patient support INTRODUCTION Human s are more or less social depending on personal circumstances; numerous studies have demonstrated the health and subjective well -being benefits of having a strong and active social network .[1-3] In the era of instant communication, this can be extended to the virtual world, and thus , participation in O nline Social Networks (OSN) also has the same effect .[4,5] Health problems, especially chronic diseases , are a circumstance that usually change how a person relates to others ,[6,7] influencing their social capital .[8] From these new needs , and because clinicians are becoming more involved in social media ,[9] there are many OSNs dedicated to health that have actual impact on patients .[10] These Health Social Networks (HSN) can be thematic (e.g. , Acor.org , Stupidcancer.org , RareShare.org) , sometimes using broad public [11] (e.g., Facebook or Twitter ) or generalist (e.g. , Medhelp.org , Curetogether.com , Patientslikeme.com) OSN platforms . In any case, they usually share similar objectives and benefits , behaving as : a point of contact between patients and health professionals , a data collection resource for companies and/or researchers , a tool for patient tracking and rehabilitation , a means of increasing interaction with others , an instrument for creating awareness and prevent ion, a source of health information, and public health surveillance with the potential to influence health polic ies, among other implications . Many reviews in the literature have analyzed the existing HSNs : Moorhead [12] concludes that the main identified benefits are: increased interactions with others that could fulfill practical and emotional needs; more available, shared, and tailored information; increased accessibility and wide r access to health information; peer/social/emotional support; public health surveillance; and the potential to influence health polic y. Such s tudies have also target ed a number of HSN limitations and unmet needs , which are summarized below and grouped by six areas recommended in the literature ( Table 1 ): · Privacy, security, and transparency . HSNs are vulnerable to risks arising from sharing information online and their consequences f or confidentiality and privacy, such as: low accessibility of privacy policies, communication and control of privacy risks, lack of user control over personal data -sharing , risks of centralized sharing of user data, lack of u ser education in maintaining confidentiality and privacy, and lack of information on the use of credentialed moderators. Furthermore, the openness and transparency of HSNs , especially in relation to commercial content and commercial users , is not guarantee d. · Validity assessment . Traditionally, HSNs have limitations on conducting controlled trials to determin e their relative effectiveness and longer -term impact on: supporting the patient –health professional relationship; enhancing general public, patient, and health professional interpersonal communication; leading to behavior changes for healthy lifestyles; and evaluating the impact of online support interventions. · Design methodologies . User empowerment, design features, interactivity, and awareness of social context are needed in the informatics systems designed for patients, their families, and their communities. Furthermore, social media has limited impact for health communication in population groups with special needs (minority groups, patient groups, culture differences) , and it is difficult to find facilitators for a self-managed health website. · System ecology . It is necessary to engage key stakeholders ( to balance autonomy, community ownership, conditions for innovation, and consumer protection) , target community -wide outcomes and participation of local community groups (they can play a key role as partners or facilitators in online support systems and integrate existing community -based psychosocial programs ), employ ecological systems theory and the principles of Communi ty-Based Participatory Research (CBPR) , address the interdependence between online and real -world support (recognizing the role that online communication can play in real - preprint · micro ad- hoc Health Social Networks (u HSN ): design and evaluation of a social -based solution for patient support world interactions , and vice versa) , and a ddress a person’ s existing social networks (e.g. , family, friends, co-workers). · Quality of S ervice (QoS). HSNs need a p atient -centered perspective in presenting content and information to guarantee timely and personalized care. It would be convenient to conduct periodic external review s of member discussions to avoid misinformation , providing effective moderation support . Furthermore, the veracity of the information is essential to ensur e that the contents correspond with the professional recommendations . · Technology enhancement . HSNs may be used in a synergistic manner with personal health records , smart devices , and through more sophisticated an d emerging interactive tools . Table 1 . HSN l imitations and unmet needs Area HSN l imitation s and unmet needs Reference s Privacy, security and transparency Risks from sharing information online without guarantees of confidentiality and privacy Lack of user control and detailed information on credentialed moderators Need for opennes s and transparency both in commercial content and commercial users Moorhead,[12] Orizio,[13] Li,[14] Weitzman,[15] Al-Kadi.[16] Validity assessment Need for controlled trials to determine effectiveness and longer -term impact Moorhead, [12] Weiss .[17] Design methodologies Need for user empowerment, interactivity, and awareness of social context Weiss ,[17] Orizio,[13] Nambisan ,[18] Huang ,[19] Al-Kadi .[16] Limited impact of social media for health communication in special needs population Moorhead ,[12] Nambisan .[18] Barriers to using a self -management health website Yu.[20] System ecology Need to engage key stakeholders to balanc e autonomy and community ownership Weitzman .[15] Need for target community -wide outcomes and local community group participation Weiss .[17] Need to employ ecological systems theory and CBPR Weiss.[17] Need to address the interdependence between online support and real -world support Wellman.[21] Need to address a person’s existing social networks Weiss.[17] Quality of Service (QoS) Lack of p atient -centered perspective in pre senting content and information Yu.[20] Need to enlist periodic external review of samples of member discussions Weitzman,[15] Al -Kadi.[16] Lack of truthful information and timely and personalized care Yu.[20] Alignment of content with science and profess ional practice recommendations Weitzman.[15] Technology enhancement Need for integration with personal health records and mobile devices Laranjo,[10] Al -Kadi.[16] Need for the development of more sophisticated and emerging interactive tools Huang.[19] The objective of this work is to translate these limitations and unmet needs into challenges by contributing the design, development , and assessment of a new concept: a micro ad hoc HSN (uHSN), to create a social - based solution for (in this case) support ing patients with chronic diseases. Background and Materials and Methods sections detail the research carried out in the design process of the proposed methodology, how the uHSN was evaluated, what quantitative and qualitat ive measures were obtained, and finally, how it was tested for use in practice and was replicated by the scientifi c community in its research . Results section reports in -depth analysis of the obtained results from quantitative, descriptive , and interpretative perspectives. Finally, Discussion section contains a critical discussion that supports our conclusions and proposes further studies . preprint · micro ad- hoc Health Social Networks (u HSN ): design and evaluation of a social -based solution for patient support BACKGROUND. Design and implementation From the challenges posed above , we formulated the following design criteria: · Privacy, security, and transparency : to ensure the security of personal information, including specific modules of privacy, confidentiality, transparency , and authentication. · Validity assessment : to create an entire validation methodology prior to the implementation stage to guarantee user needs, and encompass all user profiles. · Design methodologies : to focus on user empowerment (in this case , giving particular thought to special needs population groups) with awareness of social context , enhancing inter activity and self - management. · System ecology : to build an architecture that include s all involved profiles with their context s and relationships. · QoS: to incorporate mechanisms for timely and personalized care, guaranteeing truthful information through scientific validation by users with specialist profile s. · Technology enhancement : to integrate software modules that allow the implementation of all the proposals into multi -platform solutions compatible with smart devices, interactive tools , and health information systems. The first approach to consider when develop ing the uHSN was to work with an existing social network , such as Facebook or Google Plus .[11] However, according to our design criteria, this was not suitable , as it involve d remarkable limitations related to the connection of hardware devices, permissions, functionality limitations, privacy, and accessibility. Thus, fulfilling the previously proposed design criteria , the uHSN ( Figure 1 ) was supported on a plugin- based architecture by E lgg platform . It follows a Model -View -Controller (MVC ) pattern and allows the development of custom plug -ins and the application of a Graphical U ser Interface ( GUI) using Cascading Style Sheets (CSS) markup. These decisions we re justified because Elgg platform includes specific modules to provide many of the raised functionalities, such as: confidentiality, transparency , and authentication modules to guarantee privacy; messaging, blog , and discussion modules to guarantee user empowerment and interactive relationships among profiles; and validation and multi -user modules to guarantee truthful information. In addition, Elgg architecture allows the easy development and integration of custom modules to create new, self-developed functionalities. Indeed, Elgg platform hosts a rich development community, which provides additional modules that can be used to extend the uHSN functionalities. Furthermore, this technological proposal is innovative and fully compatible wi th smart devices, interactive tools , and Health Information Systems (HIS) , as shown in the following modules (Figure 1): a Health Level 7 (HL7) module , which allows the exchange of HL7 messages with external entities through the Mirth Connect middleware and Electronic Health Record (EHR) access ;[22] a Sharable Content Object Reference Model ( SCORM ) module , which allows access to SCORM courses on the SCORM Cloud online l earning platform;[23] a Devices module , which allows data registration from user monitoring devices, such as the Zephyr heart rate monitor;[24] and a Treatments module , which allows the definition and assignation of custom therapies to users, among others. In addition, the proposed Elgg platform provides a Representational S tate Transfer ( REST) -based web service Application Programming Interface (API), which allows external third -party agents to access the platform and specifically facilitates the monitoring devices connector and a memory -like game used in some therapies. Moreover, the visual style of the platform uses a Responsive Design approach,[25] which ensure s proper visualization on devices of any size. preprint · micro ad- hoc Health Social Networks (u HSN ): design and evaluation of a social -based solution for patient support The novelty of the technology involved, and the lack of