Admit it: The last time you went to the doctor, you Googled everything your doctor told you (or at least, everything you thought your doctor told you) when you got home.
You even Googled the new medication your doctor prescribed before dropping it off at the pharmacy, clicked several search results, and read about other patients’ horror stories when they took the same medication. Then you decided whether to fill the prescription or not. You maybe even printed out that information to take to your next doctor’s appointment so you could ask what she was thinking when she recommended the treatment in the first place.
This scenario is common for many patients, made possible in large part by easy access to social media tools that allow patients to seek and share health information.
Before the Internet was so mainstream, it was not expected (or easy) for patients to get second opinions about their health. Now it is expected that they will go online, where they can find health information everywhere, from accredited healthcare organizations and government-sponsored sites to peer-to-peer support sites, anecdotal blogs and forums, and a variety of other social tools like YouTube Inc. and Second Life.
We now have access to a bottomless pit of information (both accurate and inaccurate) on which we base our health decisions. And on top of that, we help the pit grow by feeding it with our own experiences.
As the bottomless pit grows, the issue of quality control does, too. The impact of inaccurate information on online health activities is a serious concern, because patients don’t always know how to seek and share health content that is relevant to them. Between their limited access to their own health data (electronic access to health records is still widely denied), their generally low health literacy (as demonstrated in Canada), and potentially poor personal recall of what their doctors said, the odds are pretty high that patients are getting the wrong information online and then making health decisions based on that information.
I imagine that there is a growing number of doctors who help their patients navigate health information online, while there are some who simply tell their patients not to trust what they read there. Some think
their patients’ online activities can harm the patient-provider relationship.
Patients are not going to stop using these tools, and their use reflects symptoms of larger issues. Are patients using these tools because they didn’t have enough time to talk about everything with their physicians? Do sites like peer-to-peer support and blogs offer simpler language that makes more sense to patients? Are patients able to ask questions more comfortably on these platforms because they offer anonymity? Are patients able to access information in a timelier manner because they do not have to make an appointment and wait? Do patients want their healthcare to mirror online shopping and banking?
Simply put, patients are using social media for a variety of reasons -- trust is likely only one issue in a list of many. I believe that the problem lies not in patients’ enthusiasm to use these tools, but rather in their lack of knowledge in navigating the complex and confusing landscape of health information online.
But this isn’t just about the patient.
If a doctor has a presence online, he still has a voice once the patient leaves his office.
But to get providers to engage in social media, we need to create spaces that provide positive experiences for them. To effectively design social media for health, we must understand providers’ needs and their reactions to the use of these tools.
What do providers need from their patients in order for patients to appropriately manage their own health and care? What are the biggest barriers for providers in treating their patients? How could we build tools that have value for providers and patients alike? How can we develop standards and guidelines for physicians so they understand how to appropriately live in this space with their patients? How can we understand and mitigate some of the liability threats? How can providers be compensated for engaging their patients this way?
We can leverage social media tools to address these issues. Social media, if designed well, managed correctly, and supported by the system, could optimize both patient and provider experiences. But patients and providers need to live together in this space (and be supported by the system) to ensure social media is a cure and not a virus.
— Leslie Beard is a designer working with the University Health Network's Centre for Innovation in Complex Care (CICC) in Toronto and the University of Toronto.