Liz Boehm
Featured Guest Blogger: Liz Boehm
As someone who grew up on two continents, with friends scattered all over the world, I’m on Facebook daily. And, yes, I use it occasionally to help me find a new doctor or ask a random medical question. When I have a good or bad experience – especially in healthcare – I’m likely to rant or rave on Twitter (@LizBoehm for those who care to indulge). Why should you care? Because there are millions more like me, and many who are far more engaged than I. And many of them are patients.
Social media encompasses a rather broad array of resources. Tools like Facebook, YouTube, and Twitter may be the most famous (infamous?), but blogs, wikis, podcasts, even product reviews all hold a place in the social media pantheon.
You can think of social media as both an amplifier and a filter. Social media tools allow voices that used to only be heard locally reach national, even global audiences. That means that powerful stories – both positive and negative – can permeate the atmosphere like never before. They also enable users to focus in on not just the topics they are interested in, but to sift through perspectives until they find the ones they find most compelling and credible. And unlike traditional marketing or peer-reviewed journals, consumers are in control of setting their own credibility parameters.
By now I hope the implications of social media and patient experience are starting to become clear. In many ways, patient experience boils down to story – stories clinicians tell patients to help them understand what’s happening or how to take care of themselves, stories patients tell clinicians to help them understand their pains and preferences, stories administrators tell staff to try to get them on board with patient experience programs. Social media is an amplifier of stories.
Specific uses of social media for patient experience include employing social listening platforms (such as X and Y) to understand what patients are saying about their experiences with your clinic or hospital, or posting videos of your physicians or procedures (similar to those on the Cancer Treatment Center of America’s site) to help patients set appropriate expectations before they arrive. There’s no way to go into every application of social media in healthcare and patient experience here, but let me highlight a few of my favorites:
- When innovation leaders at Radboud University Nijmegen Medical Center in the Netherlands realized that their young adult and adolescent cancer patients were falling through the cracks between their pediatric and adult oncology care resources, they created a secure online community geared specifically to the needs of these patients. Patients can swap experiences and advice on dealing with cancer, dating, school, parents, and other crucial life experiences as they work through their treatment – all without “adult supervision” apart from a trusted community manager who ensures participants follow community guidelines. Patients get better support, and Radboud has the reassurance that they can access hospital-approved content and resources. Learn more by reading Forrester Research’s case study on the community.
- CarePages recognizes that patients need to connect with friends and family members to help them heal, but also that responding to phone calls and repeating details about diagnosis, prognosis, and treatment plan can be draining at times. CarePages’ patient blogs lets patients and family members share their stories – and solicit support – without always relying on one-to-one communication. Patients and family members draw emotional and spiritual support, which enables them to approach their treatments with hope and resiliency. Just imagine putting physician voice into the equation, so that family and friends can hear physicians’ words of wisdom (with patient permission, of course) without overburdening their schedules with repetitive phone calls and meetings.
- The Mayo Clinic’s Director for Social Media, Lee Aase understands the power of storytelling. Lee’s role in media relations quickly morphed into one of master of social media as he and his team unlocked the power of radio, podcasts, YouTube, Facebook, and Twitter to share Mayo-related stories that range from the adorable (check out this adorable couple in the Mayo lobby – trust me, it’s worth watching all the way through) to the touching. And among the most powerful? Aase launched an internal blog called Sharing Mayo Clinic to share the physician and patient stories that sometimes get lost in the shuffle, but that also serve powerfully to reconnect physicians and staff to their healing missions. Oh, and in true social fashion, Aase has created an open resource, Social Media University, Global (or SMUG) to help others tap into the world of social media.
Ultimately, social media tools are nothing more or less than a platform for content creation, sorting, filtering, and distribution. In other words, they are a tool for telling and hearing stories. And since patient experience is inherently social, and fundamentally about communication, the impact of social media on patient experience is limited only by imagination. Okay, and lawyers. But if you remember that lawyers don’t get fired by saying, “no,” your job is simply to tell a story that gets them to “yes.” And maybe spread that story through the right media. Social or otherwise.
About the Author:
Liz Boehm is the Director of ExperiaHealth‘s Patient Experience Collaborative, where she brings a wealth of expertise on defining and implementing new innovations in healthcare experience, and helping hospitals and care providers create lasting value for patients and caregivers. Through the Collaborative, she helps ExperiaHealth’s clients create a competitive advantage via the sharing and adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.
Liz joined ExperiaHealth from Forrester Research where she was a principal analyst serving customer experience professionals in the healthcare and life sciences industries. During Liz’s 15 years at Forrester, she worked with the country’s top hospitals, health insurers and life science firms to craft customer experience strategies and drive business value through improved customer engagement.
Reblogged this on HealthcareVistas and commented:
Liz does a great job in framing this conversation about Patient Experience, a watchword and a key pillar in all we do (or should be). We seek to thrive in this dynamic environment marked by more patient choice and changing regulation.
Thanks for the reblog!
Reblogged this on Optimizing Healing Healthcare and commented:
In her blog “Unleashing the Power of Social Media for Patient Experience,” Liz Boehm shares some inspiring and encouraging examples of how social media is helping patients heal. Whether it’s connecting young adult and adolescent cancer patients at a medical center in the Netherlands, offering a platform in which patients can connect with friends and family members, or creating a way for powerful stories to be shared from patient-to-patient or patient-hospital caregiver, social media is opening doors for the patient experience. When patients feel connected to their family and friends, when caregivers are re-inspired through storytelling about their personal purpose and mission for the healing art of healthcare, and when patients are able to find and express their voice and lived experience, we are seeing social media at its best and how it contributes to optimizing healing healthcare!
Thanks for the reblog!
[...] Reblogged from Engaging The Patient: [...]
Thanks for the reblog!
Liz,
I think that you have touched on a very critical issue concerning the evolution of patient care. Social media is changing not only the doctor-patient relationship but is also encouraging patient-patient relationships. You have reiterated Eric Topol’s sentiment in The Creative Destruction of Medicine that patients have become consumers of medical information with the advent of the Internet and other technologies. Your focus on social media, in particular though, brought to mind the speed with which medical information can be spread, particularly because of the nature of some of these avenues. For example, not only do sites like Facebook and Twitter amplify patient experiences, but they also do so with a ridiculous amount of speed, which greatly affects the patient experience. Immediate feedback from other patients and supporters is empowering patients and equipping them with medical knowledge and support that supplements their brief interactions with physicians.
I’m also glad that you emphasized the importance of patient stories in this blog because I think that oftentimes people tend to forget that it is the patient narrative that initializes what we define as the practice of medicine. A patient relating their story to their physician is the beginning of that patient’s care. As you discuss, amplification of a patient’s story through the various social media outlets that exist today allows patients to not only share their own experiences but also learn from others. I recently read Tom Ferguson’s, M.D., “e-patients” and your examples of social media in healthcare echoed his arguments of the effectiveness of e-patient communities. What I would like to see, and what Ferguson argues for, is if doctors are learning from the patient stories shared in these communities? Do you have any information of physician involvement in these social media avenues?
The short answer to whether physicians engage in social media is, “yes.” Some blog, some have Facebook accounts, some are posting videos on YouTube. I even met a doctor recently who got himself in trouble with an insurance plan by posting a comment on its Facebook page about how frustrating it was to be a network physician.
I think your question, though, is do physicians engage in patient communities, and there the answer is more complicated. I’m hopeful that some do. Though I have no evidence, I’m confident that enterprising physicians are making great use of social media resources to inform their practices and maybe even to inform their patients. But I’d be surprised if the practice were widespread.
I think doctors’ reticence to engage with patients through social media is often justified – social media are often public resources, and the doctor-patient relationship is inherently private. One-to-one electronic communication has a name – it’s called email. Doctors probably also have liability concerns, as well – if information about their patients exists in a social media forum to which they have access, are they responsible for monitoring it? They certainly aren’t paid to, but that doesn’t usually stop frivolous, after-the-fact malpractice suits. And then, of course, there’s the question of time. Sites like PatientsLikeMe (mentioned in a post below) may hold meaningful clinical insights, and much may be gleaned from patient stories well beyond scientific fact, but how does a doctor sort the good from the bad? And how does she leave her work at work (like most of us want to) if she’s scanning blogs for patient stories at the end of the clinical day.
I think there’s an opportunity for leaders of the patient experience movement and patient activist groups to find the gems in the social media landscape and bring them to doctors’ attention. I also think that’s far more likely than seeing doctors, en masse, find them themselves.
Liz, excellent blog post! I have found your observation that “Social media is an amplifier of stories,” particularly interesting. The stories that are told by patients to their physicians are often troublesome in modern medicine. The options for health care providers to record such medical data are greatly limited. The doctor can either note the entirety of a patient’s dictation, the patient’s personal narrative, or individual construction of his or her experience with illness, or note the patient’s condition in the form of an electronic medical record. While personal narratives are particularly appealing to the patient, as they desire a very personal connection with their health care provider and wish for their every interest and characteristic to play a role in their doctor’s diagnosis, they are not always efficient, nor well-received by physicians. Physicians have often resorted to the electronic medical record as an easy, organized method of understanding patient stories. However, the electronic medical record does not allow for the individuality and continuity that patient stories often provide in the form of a patient narrative, and often overlooks social and personal details that are included in patient narratives.
Social media provides a unique solution to these problems. While being highly personal and allowing patients to fully express their medical concerns, it also serves to better connect the patient with his or her physician, and an entirely new medical community present on the Internet. This illustrates a growing trend in medicine, to see opinions outside of one’s physician, particularly through Internet-based sources. While patients may utilize social media with the intention of gaining the expert opinion from other physicians, they inevitably become connected with other patients and individuals in the health care field. While social media such as Facebook could be used by a physician and his or her patients, social media could also be used as a form of broadcasting by a patient seeking advice from his or her Twitter followers who may include patients, doctors, or even health care institutions such as universities or hospitals. Lastly, social media, can and has been used as a means of advertising by hospitals and institutions who wish to highlight certain elements of their provided service to a broad audience.
Thanks for the insightful post, Liz!
I could not agree more with the crucial element of the story in patient care and well-being. While the medical community emphasizes the science behind medicine and rallies its members based on the urgency behind pathophysiologies of their patients, the wider public community which includes patients, families of patients, and non-medical citizens rely on the stories and the social issues to understand urgency and rally people to act.
While such social media do not involve physician involvement at this point, these forums as you mention, are part of the emotional and psychological recovery of patients and their families. Being able to see others relate to you and creating a platform for conversation and community are crucial to fighting the disease or illness. Although just a symbolic gesture, being able to fight together can make the world of difference psychologically for the patient, because medical care is a two-way street, requiring proper care from the physician and strength and compliance of the patient. Social media helps fortify this second element.
Nonetheless, as younger generations are more heavily dependent on the Internet from basic information to school to shopping, I can definitely see the future generation of physicians also engaging more with patients online—perhaps not necessarily with their own patients, but by being active members on such forms of social media to be a resource for all interested parties who look up information about their condition.
Personally, my close relative has suffered from an illness that causes pain through his back and rear and has lasted for over 5 years to the point that sitting is painful for him. He’s seen over 10 doctors, who all haven’t solved the problem for him, yet when he looks online about this condition, there are hundreds of people, reciting the same symptoms he is suffering. It is through this online community that perhaps an illness like this one can be brought to attention at the medical level, if physicians also participate more in social media.
Social movements have been successful in changing medical practice in the past – just look at ACT UP’s impact in the HIV+ community. I hope that your relative and his peers are able to find resolution to their ailments through their social engagement!
I think it is great that people can interact with other people who have the same or a similar condition as them via the internet. I know that when my mom had colon cancer a few years back, she didn’t feel completely comfortable with one of her prospective surgeons. She went online to ask questions and see if anyone had a preference for a particular surgeon. She was given a couple names from some blogging former cancer patients. Later, at a visit with her radiologist, she asked about one of the surgeons suggested to her. The radiologist also recommended this surgeon, and he performed the surgery a week later. The internet helps to strengthen the patient-professional bond through a cycle of information and advice.
Social media is especially useful for patients who have very esoteric diseases because it allows them to connect with other patients like them. Getting to communicate with someone, or just hear someone else’s thoughts on a particular subject, can be very valuable since there won’t be many patients that have actually experienced the condition. A great site for this is http://www.patientslikeme.com. Doctors rarely go online to answer their patient’s questions, so social media sites may be one of the only places to get immediate answers to important health questions. The amount of people using the internet for social media is constantly rising, so the majority of future healthcare communication may occur on websites like this. It is essentially a specialized version of Facebook that currently has a community of people spanning over 1000 conditions.
I’m a big fan of PatientsLikeMe – I think they’ve done great work connecting patients with some really debilitating diseases. I also agree that patients can often support each other in finding the right resources, emotional support, and possibly even medical avenues for treatment. But there’s also a caveat emptor – you don’t always (or even often) know whose on the other end of the advice. Reason and intelligent filtering are definitely required!
The problem I see with the flow of medical information through sources like Facebook or twitter is the issue of security. I personally would never share my medical information on any of these sites. This is because I would not like other people to know my private health information, and on these sites, the information is not protected from. There are also many other issues such as security. By exposing your private health information to the Internet sources which anyone can access, you and your family may be prone to being hurt by someone. Nowadays, we emphasize the need of security of personal information in the prevention of harmful and abusive actions against us. The phenomenon of the emergence of medicine in the social media in my opinion should be structured in ways that prevent the unprotected use of medical information. Increased security could be accomplished by having incognito and protected networks of patients in contrast to Facebook. The evidence for the need of improved e-patients networks is apparent, however, there is a need for the creation of sophisticated, structured systems of networks. The emphasis of secure flow of information will be crucial to the transformation of patient-driven health care.
A very wise PR professional once told me, “if you don’t want to see it in the newspaper, don’t put it on the Internet.” I agree completely that every individual should set their own parameters around privacy, and recognize that security is never a guarantee. Where that line is will vary from person to person. I support a person’s right to skywrite their medical history if they choose, as well as to lock it in a vault if that’s their preference. Every interaction is a tradeoff of give and take. Me, I choose to use credit cards in return for cash-back, knowing that they create a paper trail of my purchasing habits. I also have no problem sending my entire medical record into a database that would be used for data-mining and public health improvement. And I’ve been known to ask friends on Facebook for a recommendation of a chiropractor or even some kinds of specialists. Other kinds, however, I’ll be keeping to myself.
[...] This article originally appeared on Emmi Solutions Engaging the Patient blog on November 26, [...]