The role of patient empowerment in the health social network. A new approach in the CSR online communication Alfonso Siano, Carmela Tuccillo, Gennaro Romano University of Salerno

Purpose  To investigate the role of patient empowerment in the health social network and related patients’ power in terms of communication activities. Roadmap Literature review on CSR, CSR on line communication and patient empowerment analysis of three health social network: Like Me, Health Unlocked and Rare Connect concluding remarks

The concept of Corporate Social Responsibility (CSR) has been discussed as a key conception in the study of business and society relations (Carroll, 1979; Hart, 1995; Hillmann and Keim, 2001; McWilliams and Siegel, 2001; Dawkins, 2004; Elving, 2010). It is a firm obligation to evaluate the effects of CSR programs / strategies on the external social system (Lindgreen and Swaen, 2004; Luo and Bhattacharya, 2006). Theoretical considerations on CSR strategy point out that stakeholders ‘expectations contribute to influence CSR online communication (Den Hond et al., 2007).

CSR communication is an essential corporate activity that contributes to lead “good” business to “better” business (Bhattacharya and Sen 2004). Social media and Web 2.0 technologies are changing the traditional CSR communication in the pharmaceutical industry (Sørensen and Peitersen, 2007). Social media sites contribute to improve communication of CSR topics such as sustainability, ecology, health or human rights in a friendly context that encourage interaction and collaboration (Isenmann 2004; Lee et al., 2006; Fieseler et al., 2010; Schneider et al., 2010). Social media communication is based on the word of mouth paradigm (Kietzmann et.al, 2011).

Patient empowerment enables patients to take an active role in their own healthcare provision which allows them to stay easily informed and ‘self-manage’ their own health services (Bellio et al., 2009). In online contexts, the empowerment of patients derives substantially from the knowledge that these stakeholders appropriate from the use of the internet and from other Web 2.0 tools (Eysenbach, 2008). Patient empowerment is considered as a philosophy of health care: patients become active participants. It makes emphasis in the importance of individual involvement in health decision making” (Aujoulat et al., 2007).

 Patients are encouraged to take an active part in their own health management through their participation in social media  Patients participate in useful work with each other and co-create new information and other meaningful activities concerning health issues  Patients communicate directly to healthcare professionals in patient centred consultations  Patients may have a decision-making role in the programs where they, themselves, receive information, or they may participate in other discussions

Social Networking improves communication, collaboration and information in the health care space. Empirical evidence (Deloitte, 2010) demonstrates that a lot of Americans use social network to discuss their health conditions, and a high percentage (36%) of users evaluate their therapy decisions with others. The extent of empowerment in the pharmaceutical sector depends on the ability of patients to discern potentially useful information about health issues using social media platforms and online communities (social network sites, blogs, forum, etc.)

Business Model Service to PatientObjectives for profit company disease management -learn, connect and track diseases for profit company wellness and condition management -share information to health institution and professionals no profit company rare disease management and research -improve information about rare diseases

PatientsLikeMe Foundation Date2004 SloganLive Better, together LaunchedOctober 10, 2005 HeadquartersCambridge, USA Users Number - Dec Health Conditions Covered ~1.200

Health Unlocked Foundation Date2009 SloganMaking healthcare more open, efficient and personal Launched2009 HeadquartersLondon, UK Users Number - Dec Health Conditions Covered 200

Rare Connect Foundation Date2010 SloganConnecting Rare Disease Patients Globally Launched2010 HeadquartersParis, F Users Number - Dec ~ Health Conditions Covered 14 Rare Diseases Community

Traditionally, patients have been regarded as passive recipients of care, with health care providers being considered the experts. The empowerment approach allows patients to acquire skills and knowledge for improving their overall health status. The rise of social networking platforms such as: Patients Like Me, Rare Connect and Health Unlocked create new standard of patient participation and unprecedented opportunities for engaging patients in their health care and for connecting patients with informal and formal caregivers, health professionals, and researchers. The centrality of the patient is the point of convergence between institutions and enterprises which could lead to alliances in order to innovate and improve the National Health System.

Alfonso Siano, Carmela Tuccillo, Gennaro Romano University of Salerno Thank you for your attention! For further information, please visit our website: