Recently, a former colleague of mine posted on Facebook that a notification showed up on his page suggesting he become friends with someone who had passed away a short time ago.
As poignant as a moment as that was, it prompted a series of questions in my mind given the how we as consumers rely more on web based services than ever before, namely:
Who gets access to your profiles when you die?
What happens to your URLs, user names, etc?
What happens to your content? Who gets the rights to your iTunes content, for instance? How do you transfer ownership?
Will digital wakes or funerals via something like a Google+ hangout ever become part of our culture?
In the world we live in today, more seniors than ever have jumped online. According to Pew, as of February 2012, one third (34%) of internet users age 65 and older use social networking sites such as Facebook, and 18% do so on a typical day.
The seniors of today represent just the tip of the digital iceberg. The issues surrounding the transfer of your online life once your offline life has come to an end are only going to become more pronounced as the Boomer generation gets older.
Online profiles, including custom named URLs like the kind you get from Facebook can be very valuable. In the past 3 years, I received several offers from people who have the same name as I do who wished to purchase my Facebook URL. For people with a URL that is highly undesirable, this may be no big deal, after all I doubt a bidding war will erupt for facebook.com/joebob1973, but what about celebrity or athlete names? Much like the valuable single letter Twitter names (Twitter.com/a for instance) there exists an economy for social media user names. And URLs.
Facebook decided to take the step to publicize their policy around profiles for users who had passed away because of a backlash caused by a new version of the site's homepage that was rolled out on Oct. 23, 2009, which includes automatically generated "suggestions" of people to "reconnect" with. Within days of the launch, Twitter users and bloggers from across the Web complained that some of these suggestions were for friends who had died. "Would that I could," complained a user on Twitter before ending her tweet with the hash tag #MassiveFacebookFail. Unfortunately for my former colleague, it seems they still haven’t figured out how to keep the connection suggestions from happening.
Now, for you Apple or Amazon users out there, think about how much money you’ve invested purchasing things like Mp3’s, eBooks, movies etc. Even though Apple now provides you with DRM-free music files, all you own is a license to play your music on up to five devices under your control and you can’t legally pass them on to others. That’s a lot of monetary value with no (current) framework to transfer ownership. Amazon has no current policy for digital rights transfer in the event that the owner passes.
DeceasedAccount.com, an online resource for understanding the transfer policies for (obviously) deceased account holders, highlights the problem even further, as almost half of the world’s most popular digital content sellers have no policies to handle rights transfer as part of estate planning.
There currently is some effort underway to help consumers navigate these difficult issues. Both AARP and USA.GOV offer advice for estate planning when it comes to digital assets. But in many cases you may be at the mercy of the policies of the content distributor.
Interestingly, there seems to be a secondary economy springing up around this issue. New services, such as FuneralOne (http://www.funeralone.com/life/webcasting.htm) now offer customers the ability to broadcast a funeral or viewing via the web and offer chat rooms for virtual mourners to share comfort and condolences. While it may be a bit macabre, services like this do fill a need. As noted in this Crains NY piece “Confronting declining revenues from other offerings, New York funeral homes are entering the digital age, using technology—ranging from photo slideshows to online tributes—to enhance memorial services.“
Taking it to the extreme, there are websites that offer live cams from inside coffins so you can watch bodies decay. In the interest of decorum, I’ve decided not to link to them from here, but you get the idea. The internet it seems, is a marketplace for anything.
To mercifully change the subject, what about pharma? With the push to adopt EMRs and digital personal health records, the implications of these issues become obvious. Who owns my data when I die? Can I get access to these records if a family member passes? What’s the process for doing so? The answers to these issues are murky at best.
Consumers are already wary of the specter of privacy issues when it comes to having all of their health information stored digitally, and the PR disaster-in-waiting is the reaction from grieving families should the transfer of this data somehow get mishandled.
It will be interesting to see how companies who make their revenue off of users of services form the web adapt and change their policies to account for the needs and wishes of the dearly departed. I’m guessing a number of lawsuits and high profile cases will pave the way for more standardized policies. But where does pharma go from here? Does the industry have any role to play in helping terminally ill patients navigate some of these issues? The answers are neither easy nor obvious.