Learning from Patients

Last week Stanford Medicine blog Scope wrote about Experts by Experience, a collection of patient stories published on the blog in early 2012. I read patient stories almost every day as part of my job, but these candid accounts—written by patients with different conditions from the online community Inspire—still struck me deeply. The past Saturday marked the 3-year birthday of the ACA and “patient-centered care” keeps rising as the hottest buzzword in the public health space. However, we are still far away from a “patient-centered” system. I believe people who work in healthcare can learn a great deal about what patient-centered care really means from these patients who shared their journeys of fighting illness and navigating the complicated healthcare system.

Empowered patients will continue to challenge the existing clinical culture; physicians need to embrace the change

Patients featured in Experts by Experience are highly motivated and knowledgeable of their conditions. Easy access to medical information enables more patients to take charge of their health. What this means to physicians is that communication with their patients will be more dynamic as patients will likely ask specific questions of their conditions, raise legitimate concerns over suggested treatments and even inquire about studies a doctor has never heard before.

These patient stories tell us because current clinical culture cannot facilitate the change, motivated patients often feel confused and discouraged after visiting their doctors. Many physicians emphasize that a clinical decision should be made based on knowledge acquired from medical training instead of a WebMD thread, but they often don’t realize patients don’t use Google to replace doctors but to make themselves less clueless and intimidated when hearing unpronounceable medical terms during their doctor visits. And let’s not forget physicians often end up learning a great deal from empowered patients.

Digital and social media will offer even more opportunities for both patients and physicians to improve clinical outcome

Patients have been enthusiastically speaking about how digital and social media can change trajectories of their care—whether it is through finding an online patient community in Google search, seeing a clinical trial page on Facebook or reading a tweet from an advocacy group. Unfortunately, physicians in general still seem uncertain about the clinical effects of these new tools. Over the weekend, a great physician friend of mine told me that he believes Facebook has done nothing good to the human society because it has distracted us from focusing on important issues. His view on social media is not uncommon among physicians. My friend does not have any presence in social media, which is probably why he has never seen how patients talk to each other in forums and the power of just being connected with “patients like me.”

I respect people who do not embrace new technologies the way I do, but if physicians’ fundamental mission is to save lives, it seems only logic to me that they care about all the measures that can make patients healthier and happier. If social media has the potential to improve patient care, which has been approved by many studies, physicians should at least understand the basics of social media even if they do not use Twitter or Facebook on a regular basis. I honestly believe once physicians make the first step in social media, they will see its value and be able to offer unique perspectives and solutions to improve care.

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