What do sick kids have to do with social media?
Well, actually a lot…
Our son was recently diagnosed with a rare hip condition. While not life threatening, it is serious and will require surgery and extensive recuperation.
We, of course, were shocked at the news. Elan is an outgoing, kind soul that goes out of his way to avoid stepping on ants. Intuitively, while my wife was finding solace through family & friends, I went online to research and connect with others.
Through social media channels such as e-mail lists, web forums, flickr, you tube, blogs, podcasts, social bookmarking sites such as delicious, online communities and Wikipedia, I was able to begin digesting different treatment options. There isn’t consensus in the medical community for Elan’s condition. Drs. generally support treatment options and surgery that they are familiar with. As bad luck would have it, we have to act quickly and make a decision that may impact the rest of his life.
I wanted to pass along the following social media pointers before I forget! Please keep in mind if you read this that we have recently visited with the best & brightest Drs in the US for this condition. Social media outreach is no substitute for medical advice. It can, however, help you make hard decisions and ‘fill in the gaps’ when considering options, opinions and agendas. It can also quickly connect you with other customers & patients to learn from their experiences.
Guaranteed that what you glean through social media won’t be on the hospital website or in the brochures!
Use social media for research & outreach- in addition to finding out who the best and brightest Drs are to deal with this condition, I sought out other families facing a similar situation- real people with real opinions. I contacted an e-mail list group owner that promptly sent me a research document- research not available through a Google or even Meta search. We still use this doc as a ‘cheat sheet’ when meeting with Drs. and exploring our options.
There is a small, hard to find, universe of leading physicians that deal with our son’s condition. Not only were we able to identify the Drs, but we were able to quickly get e-mail addresses and their preferred mode of communication. One of the treatment options that we are seriously considering came about by e-mailing an x-ray to a Drs. personal e-mail address- an address and advice that we received from an online community participant.
By tapping into support groups, we knew what treatment options the Dr would recommend before the appointment. Not only did we know more about the product but, we were prepared to ask intelligent questions based on that knowledge. We also gathered information on the Drs bedside manner, support staff and medical facility.
Nothing beats talking to customers. We have learned more about insurance, post-op problems, what the Drs don’t tell you, and Elan’s condition through support groups and wiki entries. E-mail lists and forums have ‘breathed life’ into the process. We have also been able to quickly get beyond statistics and studies that hospitals provide to connect with real people and find out what their success has been.
Even after a dozen years in the business, I am still blown away at the level of caring and emotional support that an online community provides- to complete strangers and newcomers alike.
Validate conversations & sources (be wary of evangelists)- we discovered that one of the online communities included many proponents of a certain type of treatment. This is not necessarily a bad thing but validate social media conversations! Dig deep into the relationship between conversations and companies.
Build relationships, facilitate rather than moderate- as you can imagine, emotions run wild when it comes to your child’s health. Take the high road in Internet discussions! Remember when your mom said that you get further with honey (or sugar or something like that)? Well, it’s true. No one can ever fault you for being nice. Successfully learning how to facilitate Internet discussions is a skill that takes time but will come in handy when dealing or delegating client social media assignments.
Set up an RSS feed or Google alerts- we do this every day for clients but forgot to do it for ourselves! We got this reminder from someone on an e-mail list… By setting up a newsfeed, you can capture updated stories and news. *Many of these stories that the MSM publishes are “feel good” in nature and give you hope. These are good to read after a long day of research and looking at boring medical information!
Online interaction to offline action- face to face meetings are always critical. My wife has connected with several families through a support group and is setting up off-line meetings. This just reminds me about all the event marketing that Tuvel does for clients.
To be continued…
- Elans direct connection to the Beatles
- Elan: Sept. 13 Save-A-Limb-Bike-Ride
- Celebrating the festival of lights
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