Social Media & Health Care

The explosion of social media irrevocably changed the way we live, work, shop and interact with the world around us. And as our world becomes increasingly virtual, the field of medicine has also followed suit. Today, more than 40% of health care consumers use social media as a source for important health care information—and this number is only expected to grow.

On both an organizational level and personal level, health care professionals use social media to connect and communicate with patients and peers. It’s a way to engage and establish connections. But many also use social media to provide sound information on health-related issues and discredit misleading information on the Internet.

In this special episode of Charged, some of our past guests share their perspective on social media’s place in health care and in their lives. 

Dr. Tina Duhaime, director of pediatric neurosurgery at Mass General, and Dr. Camille Powe, co-director of the Diabetes in Pregnancy Program at Mass General, have noticed an increase in patients turning to social media communities for support and advice, ahead of speaking with a doctor. 

TURNING TO COMMUNITIES FOR SUPPORT

TINA DUHAIME: Now patients, particularly patients with less common conditions, and most neurosurgical conditions fall under that category, they get a lot of their information from social media groups. So if a child has, let’s say, a cranial facial disorder, even our most stalwart kind of “follow your instructions” patients come in, saying that they were chatting with someone else with a kid with the same problem, who did it this way or that way, and what about that. 

So when the internet first became widely available, what we would find is that patients would come in with a stack two inches high of things they had downloaded off the internet about their medical condition, often which didn’t really apply to them. 

With social media, it’s a little bit different, because much of it is about reciprocal support around certain medical conditions. And sometimes, in fact not infrequently, families will be a very good source of information for our families, who then can tell us about things we might not have heard about. So sometimes, indirectly, social media actually helps us take better care of our patients. 

CAMILLE POWE:  Since social media has taken off a lot of my patients are in, social media groups related to some of their medical conditions, and sometimes they bring to me things they have learned from other women in those groups, and I think it’s really interesting to engage with people in that way, because there is actually a lot of great information you can get from peer support.

So, I am always curious to know what my patients are learning by interacting with others who may have the same disease on social media.

CHANGING THE DOCTOR-PATIENT RELATIONSHIP

For Dr. Duhaime, Dr. Cristina Ferrone, surgical director of the Liver Program at Mass General, and Dr. Barbara Smith, director of the Breast Cancer Treatment Program and co-director of the Women’s Cancer Program at the Mass General Cancer Center, there are some ways the doctor-patient relationship has positively changed as a result of social media.

CRISTINA FERONE:  Patients and their families come in well-informed. So they say, “I looked you up. I looked up your publications. And the reason I flew here from Chicago is because you’re doing this.” And so from that standpoint I do think it has changed things. 

CRISTINA FERONE: I tend to mentor a lot of high school and college students, usually young women who are interested in medicine, and, one of the last students in the last couple years, she tweeted all over the place how coming to clinic, coming to the operating room was this life-changing event, and you would hope that that would inspire more women wanting to go into medicine who are younger. So I think that that, social media has helped with that. 

TINA DUHAIME: There was a time in my career where there was a paternalistic kind of a, the doctor’s always right. And you're the patient. That was going away even early in my career. 

But, with respect to how things have changed in the doctor-patient relationship, patients now feel that they have much larger sources of information. And they will do their homework before they come to you, and even after they come to you.

So in some ways, I think it raises the bar for what you need to know. In other ways, they’ve read all kinds of things that are not applicable to their situation. Sometimes they’ve worked themselves into a frenzy. That said, I feel that, overall on balance, it’s positive more than negative.  

BARBARA: I think what started at probably at least a decade ago was how much information patients started to bring to their office visits, that early on, people would have a diagnosis. They would have very little context. Maybe they'd have some friends or family members who’d had similar experiences, but the information was really hard to get.

And then people started coming in with printouts of papers and other things that was both good and bad. And so what I liked was people were coming with the sense that there is information out there. I can make a rational choice. And that really, I think, fed into how we were thinking about shaping care. It does mean that you have to help people not go down a rabbit hole of incorrect information that’s also so easy to get online.

So we try to guide people as to what are the sources they should use. And I usually encourage people to come in and start getting the framework of the issues from us, and then be guided to what really applies to their case and not get worried about things that don’t apply to them. But I like the idea of it being a collaboration based on data.

BARBARA: As a physician or a surgeon, you're not just telling people what to do. You're explaining why they should do it. And I really like that because I think that makes it easier for the person to do the therapies or the treatments that you're proposing to them because they understand why. And that also helps them as they go along the path if something happens that’s not completely on the standard pathway. They have a perspective on it, or they understand how they can deal with it and how they can learn more about it. 

STAYING CAUTIOUS OF MISINFORMATION CIRCULATED ON SOCIAL MEDIA

However, many health care professionals caution about the flip side of regarding social media as a source of truth, stating that it can be an added challenge when patients arrive for care with preconceived ideas as a result of social media misinformation. 

TINA DUHAIME:   I find it easier if people come to their first visit with their specialist without a lot of preconceived notions. And then work with your specialist to guide you towards reliable sources of information. If you really feel that you need to look something up ahead of time, make sure you’ve got the terms right for what you're looking up. 

So if you can, show restraint before that first visit, and your clinician will help direct you as to what you really need to know. Usually, I can tell them most of what they would find online. And then, if they need additional information, we can at least point them in the right direction.

CAMILLE POWE:  I would tell patients using social media for information that it’s really no different from asking around to a group of friends and I think we have skills that we use to decide whether we think the information that a friend is telling us is true or not, and I think we can use those same skills when we’re interacting over social media

BARBARA SMITH: In breast cancer in particular, but I think for other diseases as well, there are many different types of breast cancer. There's many different stages. And the outcomes and the treatments are really specific. The whole goal of what we call “personalized medicine” are treatments that are tailored to your situation. So what's happening to somebody else or what happened to somebody else in the past may not, and in fact, probably does not apply to you. And you don’t want to get either misinformation and undertreat or over-worry based on that. So work with your doctor. Don’t be afraid to ask questions. And keep asking questions till you really feel like you have the information you need.

Dr. Helen Shih, radiation oncologist, Dr. Yolonda Colson, chief of thoracic surgery at Mass General, and Dr. Miho Tanaka, orthopedic sports medicine surgeon, tend to agree. 

HELEN: Everything is nuanced. So oftentimes patients want to know which drug is better, which treatment is better? But it’s not that simple for a given diagnosis because a given diagnosis can have a million different permutations, and it really has to be individualized to that individual. If it was really that simple, there would be no need for medical school. You would just go buy your medicine on your own, go on the Web and go forth.

It’s just to realize there are individual nuances. And it’s okay to go out there and do some research. You want to have some sense, be able to talk the language or understand the field a little bit. But make sure you check in with someone who’s actually a professional or a known expert or has experience or knowledge in a respective field.

COLSON:   So I think one of the things to think about, is it making sense? And the second is, is to understand that things are changing. And particularly with lung cancer, for example, where the majority of patients have advanced disease, they're diagnosed with disease, not just in the lung. And if that’s the case, all the advice may not be correct for you.

And so if you receive advice about that, you may make decisions that aren’t actually the right treatment for you. And so I would encourage that, if you're getting information and things, to check it. But to also go see someone who really is a specialist. Because they can tell you, is that right or not right?

TANAKA:   There's still an art to medicine.

But really, when it comes down to the science of this, you know, there are specific ways and criteria that we make the decisions of whether to go to surgery, or not go to surgery. And it really involves knowing you, right, the patient, knowing everything about all the factors that, you know, come into play. 

And so I always say that, you know, you can read things on Twitter. You can read things on WebMD. But really, to get the right answer, you know, you just need somebody to take a look at the whole picture in order to make sure that we’re doing the right thing.

SOCIAL MEDIA & MENTAL HEALTH

An unexpected challenge that some clinicians, like Dr. Ferrone and transplant surgeon Dr. Leigh Anne Dageforde also recognize is the impact that social media use can have on the mental health of providers. 

CRISTINA FERRONE: We do have to set some boundaries, because medicine is already so consuming that you need to be able to get a break, and I think that the one issue with social media or easy access, sometimes people forget about those boundaries, and you do need to get a mental and physical distance break so that you can do the best that you can do. But I think social media sometimes crosses those boundaries and people expect a response, whether it’s on Saturday or on Sunday or at 9:00 at night. 

DAGEFORDE:   I think it has its pluses and minuses. One of the downsides, is thinking that maybe I'm not up to speed with where somebody else at my level may be, or I don’t have a grant yet, or I'm only giving one talk at this meeting, or my students are doing this, but somebody else’s are doing all of these amazing other things. 

And so it can be a little bit anxiety-provoking. But I think that’s true for all of social media, which is honestly why I think I stayed away from it for a lot of my life, is nobody promotes, “Oh, I had to take my liver patient back to the OR today. And it was a disaster. And I had to call for help. And what a mess.” Like that never goes out on Twitter.    

And maybe it should, because maybe that’s what being genuine is. But, on the other hand, it’s nice, it connects across different fields. So I don’t just interact with transplant surgeons. 

It’s been really nice for the pipeline committee, because young people maybe are more active on social media.But I think that it has a lot of potential benefits as long as I think I'm careful with the potential negatives. 

SOCIAL MEDIA’S PLACE IN HEALTH CARE

While social media continues to find its place in health care, ultimately, it provides a space for many educational and connection opportunities for both patients and medical professionals. Dr. Shih and Dr. Tanaka have experienced some of the benefits firsthand. 

HELEN: I think social media is an important component in advancing medicine. I think there's a lot of people out there that don’t get the care that they need. This will be a positive way to bring people whether it’s routine health care or a specialty problem in need to the care that they need. 

Miho Tanaka: 

I use it as another way to connect with the communities, so maybe not necessarily just the patients who get injured. But I think it’s a really nice way to do some of the education, you know. 

So for me, and for the women’s program, I think it’s a really important way to kind of remain connected to the surrounding communities, to have not just a local reach, but a national reach. And most importantly, to get good scientifically-based information out there, that’s accessible. And that’s not just for physicians to read, but for the public to get as good quality information about their health.