Great points, Alison. The effective use of social media in healthcare can be of tremendous support and value. It can also help the family members in the healing process. Finally, it can provide another dimension of valuable data.
I believe, however, that you will always get either patients or physicians who may have self-serving interests in that doctor/patient relationships, with other motives that distort the reporting of true patient care. If we develop robust data centers though, these will show up as more outliers, as I believe overall it will serve the true patient/physicians whose focus is healthcare.
@ Mitch
Thanks and she was young. She had cancer but Dr.s could not find the source nor knew how to treat it. They said it was lung cancer simply because she smoked but the cancer was never iin her lungs. My family and her became big on the siite and helped riase money and was comforted by people all over the country that had the same symptoms. Now if they could take the information from that site, the forums and chat posting and help others and Dr.s myself along with my family would be thrilled.
Two obstacles to frank discussions of medical conditions on social media.
First is one I think we brought up here before -- and maybe I was the one who brought it up -- pharma companies are required to disclose bad reports by patients taking their meds, no matter how trivial or silly the reports are. If someone says, "I took this pill and then tripped over the cat and nearly fell downstairs," the pharma company has to file a report to the FDA, even if there's obviously no causal link between the two events. Pharma companies shy away from social media rather than face that kind of regulatory requirement.
The other is privacy. On social media today, users have none. Privacy settings are a joke. That's fine for many people, who simply choose not to disclose on social media what they don't want the world to know. But that would need to change if we expect people to start discussing intimate medical secrets.
I would have to agree with you on that one about how they need to monitor discussion groups, chat forums and organized posts more then just random people's Facebook pages. I know that a site like walkforlight.org is a great place to hear from people who have cancer and the family members that life with them. I know this because my mom was on the site as she passed away a little over a year ago from lung cancer at only 52. This site helps people talk about the symptoms, the side effects, the new drugs and treatments. I believe if they use sites like those the information would be more reliable.
I would have to agree that the information that is giving to the healthcare provider and then reported would be a great asset. While as said that if people were to "showcase" their illness it would skew the information. While on the other hand what happens if somehow Dr.s get the same information. While some of them get the wrong information from the patient simply because they do not do a full check up on the patient and take a lot of them for their word on the illness that they have. But on the other hand some Dr.s will prescribe medication because they get a check from the pharmacy company, I just wonder if somehow that might come into play when reporting this information to that channel.
Yes, @Ronnie, people do tend to overstate -- or not discuss -- their symptoms on social media. I know I wouldn't want to talk about some really nasty side effects on Facebook! But I think it would be really useful as part of a researcher's tool, especially as people become more and more accustomed to living their entire lives online. I think, too, those researchers that use a specially-forned social media site - perhaps a subset of a support group for cancer patients, fibromyalgia sufferers, or those with severe heartburn, etc. - would be the ideal place to monitor, capture, and analyze this data. On a fibro site, for example, those suffering from this condition are accustomed to sharing their symptoms, which medications and treatments work or don't, and are more comfortable discussing various treatments and options than in a typical Facebook setting.
I agree, Ronnie, that people having the opportunity to "showcase" or broadcast their self-defined illnesses can skew the information for those wanting attention, and/or the affirmed hypochondriacs.
The value I see, that Alison's article is drawing from, is where there is direct self-defined information provided by the patient directly to the provider, and then that information is aggregated to better understand population health issues. That channel can be beneficial.
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