Social Media, Media and Coverage
|
If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL). |
Abstract
Background: In Canada, there have been a number of recent examples of the patients effectively advocating for access to innovative medical technology through the use of social media. Based on an analysis of two high profile cases (the endovascular treatment of MS and the use of Herceptin for small tumours), some of which I recently published in the journal Nature, I will discuss the impact and challenge of social media on making funding decisions and the challenges it presents to healthcare organizations and funders.
Methods: Case studies, media analysis, Google's insight for search analysis, Twitter analysis, Facebook analysis.
Results: Although both procedures lack evidence for effectiveness, public and social media pressure was able to direct money for research for both treatments. In both cases, traditional and social media increased the impact of each other’s content. Health care decision makers responded very quickly to calls for access in the face of mounting internet activity. In the case of the use of Herceptin for small tumours, the woman whose twitter campaign began the calls for the expanded coverage was able in less than a month engage the traditional media and get the Government of Ontario to grant her access to the drug for her cancer. For the endovascular treatment of MS, in three days after an initial news article, the MS Society of Canada announced funding to research the procedure, even though there was a great deal of opposition from medical and research experts. Of interest regarding the MS treatment was that we found that the social media activity around the procedure was very geographically defined within certain countries.
Conclusions: Social media makes it considerably more likely that patients learn about innovative and unproven therapies. The mobilizing power of social networking means that unprecedented pressures can be applied on politicians and research funders to expand access to procedures for which there is little scientific support. It allows patients a greater platform to challenge health care policies, research priorities and rulings. Decision makers need to better engage the public, and not necessarily through social media, within the governance of the healthcare system and to be better able to justify decisions. Health services and policy researchers need to develop better tools for analyzing social media (particularly trends in health conversations).
Methods: Case studies, media analysis, Google's insight for search analysis, Twitter analysis, Facebook analysis.
Results: Although both procedures lack evidence for effectiveness, public and social media pressure was able to direct money for research for both treatments. In both cases, traditional and social media increased the impact of each other’s content. Health care decision makers responded very quickly to calls for access in the face of mounting internet activity. In the case of the use of Herceptin for small tumours, the woman whose twitter campaign began the calls for the expanded coverage was able in less than a month engage the traditional media and get the Government of Ontario to grant her access to the drug for her cancer. For the endovascular treatment of MS, in three days after an initial news article, the MS Society of Canada announced funding to research the procedure, even though there was a great deal of opposition from medical and research experts. Of interest regarding the MS treatment was that we found that the social media activity around the procedure was very geographically defined within certain countries.
Conclusions: Social media makes it considerably more likely that patients learn about innovative and unproven therapies. The mobilizing power of social networking means that unprecedented pressures can be applied on politicians and research funders to expand access to procedures for which there is little scientific support. It allows patients a greater platform to challenge health care policies, research priorities and rulings. Decision makers need to better engage the public, and not necessarily through social media, within the governance of the healthcare system and to be better able to justify decisions. Health services and policy researchers need to develop better tools for analyzing social media (particularly trends in health conversations).
Medicine 2.0® is happy to support and promote other conferences and workshops in this area. Contact us to produce, disseminate and promote your conference or workshop under this label and in this event series. In addition, we are always looking for hosts of future World Congresses. Medicine 2.0® is a registered trademark of JMIR Publications Inc., the leading academic ehealth publisher.
This work is licensed under a Creative Commons Attribution 3.0 License.