BY GREG BROZEIT Sometimes you have to give up some freedom to experience Life, Liberty and the pursuit of happiness. Think about that the next time you get on a commercial flight. The only people on the plane who have the freedom to fly it are the pilot and co-pilot; passengers give up some of their theoretical freedom because of the pilots skill and training. Until recently, the same held true for medical care. Patients generally defer to physicians knowledge and experience. It is not too much to say that for much of the history of the world, the doctor-patient relationship has been built on an authoritarianism built on expertise; it still exists in most parts of the world. This has been steadily changing in the United States, especially since the success of AIDS/HIV activism in the 1980s. Other disease populations took note. With the birth and rapid expansion of the internet in the mid-1990s through the new millennium, the internet has, while not eliminating the traditional roles, has dramatically changed how patients interact with their doctors. The democratizing effect has been hastened and expanded through the proliferation of social media, which includes websites, Facebook, Twitter, blogs, and text messaging. Authors of a recent paper published in Future Oncology suggest that social media may positively impact cancer care. In addition to enabl[ing] connections between patients and medical providers, social media is creating new means for health education, and providing opportunit[ies for] patient input in cancer research. The authors cite the Myeloma Crowd Research Initiative (MCRI) as an example of a social media platform [that can] increase funding for cancer research through crowdsourcing (or crowdfunding). Most importantly, [h]arnessing the power of social media may stimulate interest in cancer clinical trials. Indeed, more than increasing participation, social media might even have an important role to play in shaping clinical trials and create ways to modify trials as they are being conducted. Social media breaks down barriers in time (individuals can access and participate on their own schedules and across time zones, which can be especially helpful to patients dealing with dex) and geography (people can connect virtually and not be constrained by where they are or physical means of transportation). It can also enhance access to health information to speed up and enable new forms of collaboration and information gathering between and among patients, clinicians, researchers, institutions, as well as the biotech and pharmaceutical industries. Of course, there are potential problems that must be recognized and overcome. The authors warn that the ease of data sharing may make violations of patient privacy more likely and cite examples like the well-publicized breaches of confidential information using credit cards. The bottom line, however, is that social media increasingly offers more opportunities to break down the traditional authoritarian doctor-patient relationship in ways that greatly benefit both. Patients are more aware of the range of treatment options that fit them. They become active participants, not passive subjects. How this story will play out in future history is still somewhat nebulous. Yet, as we apply these lessons to our lives, the benefits ultimately mean more freedom and more choices. Social media, taken to its extreme promise, may be an important step toward helping patients become integral partners to cure their own diseases. It makes expertise available to all. If, for example, we consider the case of commercial flight, the days when we all become pilots of our own flying machines in a Jetsons-like future might not be so far-fetched after all. It might be another expansion of the definition of freedom.
about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.