Over the last couple of weeks, I have been reading a number of articles about the possibility of Facebook somehow entering into the medical sphere. Today, I received an excellent review of the topic by Judy Siegel-Itzkovich from the Jerusalem post. A personal note, it is always a pleasure to read her articles as they reflect the decades of experience she has in the field of medical reporting.
As Ms. Siegel’s article notes, sharing medical information via the Internet is almost as old as the Internet itself. From the very first email that asked how to manage a particular case, and especially once it was possible to attach photographs and scans and other medical data to the message, the Internet has been a critical way for people to work together towards a diagnosis.
In an earlier blog post, I spoke of the website called PatientsLikeMe. The idea is as simple as it is brilliant. With the clear understanding that privacy may be sacrificed or at least somewhat dented, people with specific illnesses and conditions find other similarly affected individuals on the website. At that point, in a forum type environment, the users are free to share whatever information they wish. It should be no shock to anyone that a five-minute conversation with another person suffering from a particular disease can be more enlightening than multiple visits to various doctors.
A website like PatientsLikeMe is also able to help people traverse the experience of having the particular condition. There is a lot more to having Parkinson’s than having a brain scan and taking medications. For example, I am not aware of too many colleagues who are experienced enough to discuss such “non-medical issues” as intimacy for someone who has a neurological disorder. If anyone thinks that this is not a critical issue, then they have become far too focused on a disease and forgotten the person who has it.
Sharing medical information via Facebook is inherently no different than sharing it via a site like PatientsLikeMe. It might be necessary to create a virtual wall between the nonmedical and medical information being shared. But all online communities have information about their users that could be considered sensitive. Just for example, based on the times that a person accesses a social forum, one could probably build a pretty good calendar of this person’s daily and even monthly activities.
I’ve said this before and I will say it again – if you have any expectation of true and complete privacy on the Internet, then you are fooling yourself. Top level companies, with the resources to ensure the best possible cyber protection, are constantly being hacked. The only way to be safe is to never log on. I have no doubt that a reasonable hacker could extract every detail about my life within minutes. But the benefits I gain from using the Internet far outweigh the privacy risks, for me. This is a personal decision of mine, and everyone must decide for themselves how much risk they are willing to take on.
There is no question that Facebook is always looking for new venues to increase its popularity and value in the eyes of its users. But there is also no question that medical information has a very high value on the [legal] market. If a pharmaceutical company can track the response to a new medication by a analyzing Facebook posts, then in truth, we all win.
The information gleaned from these posts could very well identify a problem before it hurts the public, or conversely could identify an unexpected benefit to the medication. There are a whole range of medications that were developed for one purpose but became a multibillion-dollar business for what was arguably a side effect.. One such medication is often referred to as the blue pill, and has had a dramatic effect on the lives of millions of men and their partners.
As long as an individual has the option to opt in or opt out of a particular feature, it is hard to argue against the inclusion of medical information in Facebook. In fact, despite the countless attempts at creating a unified and universally accepted personal health record that would collect, store and share our personal medical information, no one product has truly succeeded in these tasks.
It is fair to say that everyone knows Facebook. What if Facebook had a plug-in that became a universal personal health record? Facebook already has a whole set of functionality that allows other online tools to exchange data with it. Clearly, a further level of security would need to be added to protect any medically oriented information. But Facebook could truly become the ideal platform for sharing critical medical information across all devices, whether web-based or on the desktop. I admit that I have not personally investigated the present list of add-ins for Facebook that allow for storing medical information. But I imagine it would be far easier to convince the present multibillion-dollar EMR companies [like EPIC] to create information exchange tools with Facebook versus a small unknown startup.
Twitter has already been used to share information in mass casualty situations. When a natural disaster strikes and mobile phone service may be unavailable, it is already technically possible to mount wireless networking hardware onto personal drones and have them hover over the disaster sites. These drones could be used in flood areas, post earthquake situations, most any weather conditions [perhaps excluding hurricanes] and could allow the injured and trapped to still be able to use their mobile phones as a web-based form of communication.
Everything in life that is good and useful still has a cost. The more we sacrifice our privacy, the more we can benefit from shared information. For some people, any leak of personal information is intolerable. While I admit that I do not agree with or even understand such an extreme viewpoint, I respect it. If I cannot convince someone that the benefits of allowing their information to be shared is worthwhile to them, then my remaining option is to make for a better and better argument in favor of sharing.
The day will come, quite soon, when information sharing is absolutely required for opening a bank account, staying at a hotel, making a “credit card” purchase and much more. For those who will still refuse to have any personal information shared, they will struggle. But the beauty of the society that I live in, is that everyone has that choice.
Thanks for listening.