How does a health care agency listen to patient complaints in the era of social media? Well, the easiest thing to do is to ignore complaints or to explain them away. The best practice: Treat complaints as critical nuggets of information.
Let’s start with a bit of context. The U.S. Department of Health and Human Services and the Indian Health Service have an extensive process for tribal consultation. There is a formula for listening to tribal leaders about its operation, priorities and budgets. There’s also an open line for internal IHS reform. The IHS collects data about best practices, ranging from treatments for cardiovascular disease to partnerships with traditional healers. This is a simple, but important, way to share ideas about programs or treatments that work.
So the context is that the Indian Health Service has an extensive practice collecting information – complaints – from tribal and community leaders. In general the Indian Health Service does a better job of listening to its constituents than most health care agencies. But that system was designed for another time.
So back to the question: How does a health agency listen to patient complaints in the era of social media? Each unit, clinic or hospital has a formal process, but most complaints aren’t filed, they are spoken between family members or said in the waiting room? How does a modern health care agency learn from those?
This is where the new world of social media kicks in. Patients are contributing thousands of bits of information on Facebook in a group called, “I just spent 6 hours at IHS just for them to give me Tylenol.”
Angel White Eyes writes from Pine Ridge that she got the idea after getting sick a couple of months ago. “I was throwing up and coughing up blood. Plus had flu symptoms. I contemplated on going to IHS all weekend because I knew they'd only give me Tylenol.”
Her Facebook friends convinced her to go into the clinic anyway. “After sitting at IHS for 4 hours, I told them all my symptoms, and they said I had a virus and gave me some Tylenol and cough syrup and told me to stay home,” White Eyes said.
Then she posted a rant to her Facebook page. “At first I had joked about creating the group but one of my friends convinced me that it should actually be done. And I knew there were a lot of people who had their IHS stories too. I did expect to see their complaints and what had happened to them at IHS. I didn't know what to categorize the group so I put it as just for fun because IHS is a joke in a way.”
More than 1,600 people have joined the group and are telling their own stories. Long waits and Tylenol are common themes. And not all of the information is critical. Some report good experiences with IHS.
This may sound odd but the Indian Health Service is lucky to have such a page already created on Facebook. The agency ought to embrace it, monitor it, react when it can and learn. It’s golden intelligence because it’s a real time reaction from patients. (This is why federal agencies ought to have a social media policy that allows open access to Twitter, Facebook and other public communication tools).
To me the most damning complaints on Facebook and other comment boards is from the people who’ve completely given up on the Indian health system. Some say it’s better to make a co-payment at an off-reservation clinic because service is better. Or they suggest using insurance at IHS until their insurance deductible is met and then fly free from the system. That is a narrative thread that limits what can be done to improve Indian health for every patient. If you’ve already given up, why bother?
But those who complain openly want a health care system that works. Every time they write about what happened to them, it’s an open invitation for improvement. The IHS is lucky to have so many volunteers posting helpful information. In fact, I would put a terminal in every waiting room, perhaps with someone who could help patients who don’t use computers to get even more direct response. Embrace Facebook.
As a friend wrote on Facebook: “Angel White Eyes … Bless your Heart!! haha! This is too TRUE!!”
Mark Trahant is an advisory board member of InvestigateWest and a Kaiser Media Fellow examining the Indian Health Service and its relevance to the national health care reform debate. He is a member of Idaho’s Shoshone-Bannock Tribes.
