New paradigm for medical research? Patient-initiated research
Colleen Burns 120000C4RP firstname.lastname@example.org | | Tags:  ibm_redbooks social_business healthcare carol_sumner
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Social business is not just a change of tools. Who cares if you're using a database, a spreadsheet, or a good old fashioned notebook? All of those are tools used in the process of getting things done (some are obviously more efficient than others). A new set of tools is changing the game. What is powerful about the social enterprise is not only that things are done differently, but that the actual objectives are changed in the process.
Take, for example, research on a rare heart disease, called Spontaneous Coronary Artery Dissection (SCAD). Until fairly recently, it was a poorly understood disease, with almost no research being done on causes and treatments. This was due in part because there was not a large enough group of patients known to have the disease. Without a critical mass of patients, research institutions could not conduct viable studies. But that was before the era of social media and a woman named Katherine Leon, who took it upon herself to change things.
Ms. Leon suffered a heart attack not long after giving birth to her second child. It was discovered that she had SCAD. Through participation in an online community, called WomenHeart, Ms. Leon connected with approximately 85 other women who had also been diagnosed with SCAD. Interestingly, their treatments varied widely – primarily because almost no research had been done on the disease and therefore there was no standard protocol for treating it.
Ms. Leon attended a symposium on women's heart health and approached a cardiologist from the Mayo Clinic. She proposed that the cardiologist research SCAD and also helped recruit patients for a study from her pool of online connections. In this case, the patients initiated the research by pooling together and approaching scientists. This is a reversal of what usually takes place – where scientists determine what they want to study. Naturally, their interests focus on what is feasible to study. In this case, SCAD was not considered a viable subject, until the patients banded together and showed that it was.
The objectives of the researchers at the Mayo Clinic were actually changed because of the social media environment. The Mayo Clinic is planning two more studies on SCAD. One of the researchers noted that it would have been impossible for her to find and recruit as many SCAD patients for the studies without the online community. Both the researchers and the patients have been empowered by this new environment.
How might your business change in the new environment? It's impossible to tell, but very exciting to contemplate.
Carol Sumner is an Accelerated Value Leader with IBM Collaboration Solutions who specializes in collaboration systems implementation and administration. Carol has recently added the role of social business champion within IBM, helping teams make the most of social media. What she enjoys most about her days is helping people solve problems (and playing golf). You can contact Carol at email@example.com or through Twitter (@sumnercl1).
Carol is an IBM Redbooks Thought Leader