by Denys A. Wahl, Laurence Triouleyre and Victoria Monti
OsteoLink combines online and in-person activities to bring a new community-based approach to osteoporosis management
Osteoporosis is a disease characterized by low bone mass and deterioration of bone tissue, resulting in an increased risk of fractures. Globally one in three women and one in five men over the age of 50 will suffer an osteoporotic fracture in their remaining lifetime. Importantly, osteoporotic fractures cause pain, deformity, disability, loss of independence and social isolation. The economic burden of osteoporosis in Europe is significant. Total direct medical costs are estimated at €36 billion a year and are expected to double by 2050 with the ageing population. Despite the availability of treatments and educational awareness, there is a problem of low compliance to treatment, leaving the patient a high risk of fracturing a bone.
In 2009, the International Osteoporosis Foundation (IOF) conducted a multinational survey to investigate any existing gaps between physician and patient understanding of osteoporosis. It aimed at understanding barriers to patient compliance and identifying ways to address unmet needs and improve communications. Telephone interviews were conducted with 844 patients and 837 physicians in 13 European countries.
The findings revealed clear disparities in patient and physician perceptions of osteoporosis, indicating a need for increased patient support. Findings also showed that patients feared fractures, yet their compliance to treatment was poor, shedding light on communication shortcomings. Most patients expressed the need for easy-to-understand materials and greater interaction with their physicians and with other patients. In addition, physicians agreed that osteoporosis organizations were among the most credible sources for information [Rizzoli et al. (2010) Arch Osteoporos 5: 145–153].
To help address these communication gaps and respond to needs expressed by patients, IOF, in partnership with the University of Geneva (Switzerland), developed the OsteoLink project, a new community-based initiative. OsteoLink is the first online and in-person social network for people with osteoporosis, their friends, family and healthcare professionals.
The creation of an online and in-person community initiative is supported by data showing that people over 50 were the fastest growing users of the Internet – particularly in Europe. More people at this age are using social networking websites to stay in touch, and to find assistance on medical matters. The OsteoLink project demonstrates that, contrary to popular opinion, an increasing proportion of people over 50 use the Internet on a daily basis to research their health problems and discuss them online. OsteoLink makes it easier for people to share their experience, find credible, up-to-date information about osteoporosis and learn from one another.
OsteoLink is led by collaborative task forces of IOF member National Societies (about 200 societies worldwide, including 87 in the European Union), to ensure each community is relevant to the local needs of people with osteoporosis, to their culture and their language. The task forces create OsteoLink (online and in-person) networks that best suit the needs of the osteoporosis community at the country level. The project is funded by grants from the EU and the Swiss Confederation through the Ambient Assisted Living (AAL) Joint Programme on research, Amgen (Europe) GmbH in collaboration with GlaxoSmithKline (GSK), and other partners.
OsteoLink is currently piloted in Sweden and Austria since December 2010 and recently launched in Switzerland and Australia. As of September 2011, Austria counts 1,707 unique visitors and 118 active users who post blogs and comments on the forum. Over 40% of the visitors returned to OsteoLink more than 25 times, suggesting a higher than average quality of experience. Sweden had 1,692 unique visitors and 147 active users and received over 27,237 page views. Discussions focus on prevention, research and healthy living. In order to limit costs and ease the development and management of the OsteoLink platforms, all new platforms will use the free-of-charge open-source content management system Umbraco.
OsteoLink's global media launch in March 2011 drew attendance from nearly 200 Osteoporosis Societies and 27 journalists either in person or by webcast. By the end of 2011, OsteoLink platforms will go live in Germany, Greece and Portugal with an expected growth of five more country-based platforms per year in the coming years.
Communities take time to develop. Once a critical number of users is recruited, sites tend to grow exponentially. Encouraging figures from pilot countries show high engagement from those visiting the site, highlighting a real need for a platform like OsteoLink, regardless of whether Internet usage is high (Sweden) or low (Austria). OsteoLink will activate engaged members to identify and motivate others.
Denys A. Wahl
International Osteoporosis Foundation