Can a hashtag change healthcare? In our world, it can. Gone are the days of healthcare being 10 years behind the technological curve. Today, individuals and organizations are meeting up online and using these tools to make a difference in healthcare. In some cases, like "e-Patient Dave" deBronkart's, the difference is choice rather than consent: The choices he discovered via social media can empower other patients to beat his type of cancer. Technologies such as electronic health records were not available to help artist and patient advocate Regina Holliday's husband beat his cancer; she has since taken up paintbrush and keyboard to write on wallsonline and offlineto share her healthcare story and advocate for change. Innovative physicians like Dr. Wendy Sue Swanson feel obligated to use these social technologies to connect in new ways with patients; and hospital community engagement director Nick Dawson says that social media in healthcare has evolved from 1.0 (or Social Health 101) to 2.0 (or graduate studies in social health), as it is has been embraced across all parts of healthcare.
We're at the beginning of a revolutionthe switch from informed consent to informed choice in medical decisions. Social media is playing a vital role in this transformation.
I'm alive and healthy because of great doctors. Diagnosed with advanced kidney cancer, I received care from a great oncologist, a great surgeon, a great orthopedist (when the cancer broke my leg), and a great primary care physician. Their approach is choice: "Here's the situation. There are three things we could do, and they all have trade-offs, so the right choice really comes down to your preference."
But the 40 years of research reviewed in the book Tracking Medicine, by Jack Wennberg, MD, show that although most medical decisions involve more than one option, often the patient is simply given a consent form to sign, sometimes while en route to the operating room. That's consent (supposedly informed), not choice.
The databases Wennberg analyzed show an amazing pattern of "practice variation," which means the probability of your receiving many types of treatment depends largely on unscientific factors. Often it is the customs of local doctors that are responsible: "I just don't believe in doing it that wayI think it's better this way." Sometimes they provide no evidence. The odds of getting a treatment may also depend on how much of it is available in your neighborhood. And most doctors have no ideathey may honestly think they are practicing good medicine.
The impact on us is risk: Every hospitalization carries risk of harm or death. That doesn't mean stay out of the hospital; it means don't take the risk until you have assessed your options.
What's the remedy? Mine was social mediaan online patient network. My doctor recommended the Association of Cancer Online Resources (ACOR.org), a multichannel participatory platform that includes email distribution lists, wikis, and other online resources for physicians, patients, and others dealing with cancer.
ACOR members told me there is only one treatment for my disease that approximates a cure (HDIL-2)and most patients are never told about it. Why? Because it usually doesn't work, most hospitals don't offer it, and most physicians don't know the latest information about it, so they may think it's not worth even suggesting. Considering that treatment was the only thing that had a chance of curing me, don't you think I should have decided if it was right for me?
That's what I mean about choice. Since all options have trade-offs, don't you want to choose among them? If we don't ask, we may have no say in how the options are prioritized. Healthcare social media platforms like ACOR help expand our awareness of the range of options that may be available to us.
The good news is that patients and policy people are waking up. Last December a global seminar convened in Salzburg, Austria, and in March published the "Salzburg Statement," a declaration of principles that begins: "We call on clinicians to recognize that they have an ethical imperative to share important decisions with patients."
Until that sense of ethical responsibility becomes part of the culture of the traditional medical establishmenta change that may take a full generationour best option is to inform ourselves by talking to people who've been down that road before: fellow patients. And by far the best way to find these fellow travelers is through social media.
Dave deBronkart (@ePatientDave, epatientdave.com) is volunteer co-chair of the Society for Participatory Medicine (participatorymedicine.org) and a blogger, international public speaker, and policy advisor on patient engagement.
Occasionally, I am asked why I decided to write my outrage on a wall. I respond, "Which wall? The wall at the gas station or the wall on my Facebook page?"
On May 27, 2009, I attended my first Health 2.0 meet-up, hosted by Christine Kraft. At that point, I did not know the term "Health 2.0." That day, I left my husband's side for five hours while he was in hospice. I sat in a room filled with thought leaders from the movement and proposed I would paint a mural depicting my husband's medical chart. This mural would eventually combine my husband's personal medical information with the open-format design of a nutrition label, and would do so on a wall in Pumpernickels Deli for all of our neighbors to see. The group was amazingly supportive. They would help me to channel my vision for the next large mural, "73 Cents" (see Figure 1; reginaholliday.blogspot.com/2009/09/dark-willow-and-73-cents.html), a painting that depicts our family's horrific medical journey and lack of information access prior to my husband's death. Due to a large social media following and local news coverage, the image of the painting was broadcast throughout the world and is inspiring advocates for patients to this day.
In the following months, I continued to blog, tweet, and post about patient rights. And I fell more deeply into the embrace of the Health 2.0 movement. I loved the participatory tone of Health 2.0 chats. I rejoiced in the openly disruptive comments often posted by people who were reshaping the health system without institutional permission.
I don't know if healthcare strategist Matthew Holt (www.matthewholt.net) and other Health 2.0 friends consider themselves "street," but the Health 2.0 movement has much in common with the street art movement. The innovators in health data often sidestep traditional institutional hierarchies in their attempt to create better medical care. Using a loose organizational structure supported by the tools of social media, these innovative thinkers post their work in the comments sections of online patient communities as well as in insider publications within the medical field. Their "Code-a-thons" mimic in participation and intensity the energy of a well-attended flash mob. The frequent rise and fall of tech start-ups within the Health 2.0 community, while regrettable, reminds me of the ephemeral stencil art of the gritty street. Their very short-term existence creates and fuels a type of graffiti "tag." The abandoned start-up's websites and forgotten health-care logos litter the web. They are like "Obey" or "Borf", part of a meaningless urban chatter, when viewed alone. But view all of those tags together and they can lead to a data-access movement.
I am amazed and honored that I am a part of the world of Health 2.0. I gladly set up my easel and paint images of data streams and Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores on city streets, as tides of people pass around me. I may be here today and gone tomorrow, but because of the openness and availability of social media, my work in art and medicine can always be seen in the cloud.
Regina Holliday (@ReginaHolliday; reginaholliday.blogspot.com) is a DC-based patients-rights artist and advocate. She is currently working on a series of paintings depicting the need for clarity and transparency in medical records.
As a doctor, I firmly believe I have an obligation to share my experiences in understanding pediatrics online. Technology simply makes it easier to do so. Medicine is far from static, and being online allows me to share what I learn with my patients. Parents and patients are online far more than they are in my office, so instead of exchanging ideas only when they gown up in exam room number 4, I can join them where they already are: in social networks, on the Internet, on their smartphones, and on YouTube. Sharing expertise online is an efficient format to inform thousands at once, perpetually.
I also firmly understand that patients want intimate, personal, responsive, and empathetic care from doctors. All medicine can't be practiced online. With technology and new media, we physician-patient dyads are no longer constrained to the exam room as our sole educational space. Acknowledging those truths, I've found a better balance: I work part time in a clinic seeing patients in a traditional model, and part time using tools like Twitter, my blog, and YouTube to share what I know or what I'm learning.
In my mind it's clear how technology builds a bond between my patients and me. This isn't onesided; rather, it's bidirectional. I feel more connected with science, with my mission in curing children of illness, and with my patients via social media. I give a lot to technology; I get far more in return. I suspect my patients would also echo this sentiment. There are two essential elements that technology provides to my roles as a pediatrician, mom, wife, and community member.
Sharing. I share thoughts on new research, new opinions, and new trends in parenting and pediatrics. I share my own stumbles as a parent. Physicians share opinions every day; sharing online is arguably no different. Families in my practice (and others outside of it) can follow my online content year-round and have access to what I think about new research or controversial parenting topics.
Education. I'm an educator by profession (pediatrician, former middle-school teacher, and mom). Innovations like Google Body allow me to use advancing technologies to demonstrate, teach, and inform families why their child is ill or in pain, or how they'll heal. I often send parents to my blog, as it offers comprehensive detail regarding the rationale behind my recommendations. For example, why do I suggest no Tylenol before shots? Why do I think it's essential to keep children rear-facing in the car seat until they're two years old? In the 15- to 20-minute visit I'm allowed in practice, there simply isn't enough time to discuss all that we want to.
My blog serves as a repository of my advice and of information that reflects where I think science can help us make great decisions for our children.
Dr. Wendy Sue Swanson (@seattleMamaDoc) writes the Seattle Mama Doc blog (seattlemamadoc.seattlechildrens.org) for Seattle Children's Hospital, the first pediatrician-authored blog for a major children's hospital.
For college students, spring means more than warmer weather. Indeed, students are focused on the school year ending and on progressing to the next level in their education. What's next? Freshmen, wise with the accumulated wisdom of two semesters, become sophomores. Sophomores move off campus. Juniors are busy contemplating internships.
Much like students in spring, many individuals and organizations involved in healthcare are finishing up their "freshmen" or "sophomore" years of using social media. In the past few years, there has been a movement in the industry that centers on the adoption of these social tools to change how providers connect with patients, other caregivers, and employees. The ways in which they are using social media differ almost as much as the various majors that sophomores choose.
According to Ed Bennett's Hospital Social Network List (ebennett.org/hsnl), more than 900 hospitals in the U.S. are using some form of social media. There are YouTube channels, Twitter accounts, Facebook pages, blogs, and more. He also links to lists of social media sites from Canada, Europe, and Australia. According to Bennett's data, the hospitals on his list include some of the most recognized names in healthcare. It's hard to imagine they were once freshmen.
The early days of social media in healthcare were about claiming your spot: Which dorm was cooler, Facebook or Twitter? There were more questions than answers. Is it okay to engage with a patient on Twitter, or is that a HIPAA violation? Should something as serious as healthcare appear on the same site as where kids are posting pictures from last night's party? These were heavy questions for a freshman early adopter.
Fast forward a few months and those early questions give way to success stories. Patients began finding and talking to doctors online; they discovered new resources to enable them to more effectively participate in their own care. Support groups formed online. Savvy healthcare providers stopped talking at patients through marketing and began engaging more authentically with them.
In January 2011, a cornerstone of the healthcare social media movementthe Sunday-night #hcsm Twitter chatturned two years old. Our original freshmen had all grown up. Without a doubt, this moment is an exciting time for watching healthcare social media evolve, as providers move away from discussions about which platform is bestbeyond ROI 101 and HIPAA 102. The upperclassmen of the industry are exploring how to use social tools to influence the health and wellness of patients in more effective ways.
In late 2010, Mayo Clinic launched its Center for Social Health (socialmedia.mayoclinic.org), a consortium of industry thought leaders and early adopters. The Cleveland Clinic has launched its "Let's Move It" mobile smartphone application (and online campaign, letsmoveit.org), designed to encourage people to be active. Other enterprising health systems are looking at geolocation services to allow people to "check in" to health activities. The potential innovations are endless. The upperclassmen years ahead will lead the way to graduate studies in areas such as mobile health, disease-specific communities, and improved design and integration of electronic medical record systems.
Nick Dawson (@nickdawson) is the administrative director of Community Engagement for Bon Secours Virginia Health System in Richmond, VA.
As you can see, healthcare is evolving along many trajectories with the help of social media, from 1.0 to 2.0 and beyond. Stakeholders from all dimensions of the healthcare ecosystem are embracing social media to improve the quality of care to which patients have access. Perhaps most important, we have moved from questioning the efficacy of social media in healthcare to experimenting with how it can be used more effectivelyand we are changing healthcare as we go.
Dana Lewis (@danamlewis) is the founder and creator of #hcsm, the popular Sunday-night healthcare chat on Twitter. She is the interactive marketing specialist at Swedish, a nonprofit health system serving the greater Seattle area, where she develops and implements social and digital communication strategies. She started using social media after her diagnosis of type 1 diabetes in 2002 and continues to engage online to improve her own healthcare and advocate for patients.
©2011 ACM 1072-5220/11/0700 $10.00
Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. To copy otherwise, to republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee.
The Digital Library is published by the Association for Computing Machinery. Copyright © 2011 ACM, Inc.