07 Apr The social media ‘cure’
In England, a physician terminally ill with cancer has turned to social media to chronicle her view from both sides of the bedside and to try to improve the health care system for patients.
Here in British Columbia, a campaign to save people from dying of sepsis – widespread inflammation caused by an infection – used YouTube videos and Twitter chats to meet its goal of saving 150 lives in 150 days. By the end of the 150 days, the tally of lives saved stood at 151.
Social media is meeting medicine and the prognosis is favourable.
B.C. health care professionals and technology experts are working on ways to use social media to improve health care.
And the province is home to innovative start-ups that are using social networking tools to help patients connect with fellow patients and medical experts, and take control of their own health.
“I practise in emergency medicine and it’s incredible that, over the last year, when I practise, many patients come in and say ‘I found this on social media,’ ” said Dr. Kendall Ho, an emergency medicine specialist and founding director of the University of B.C.’s eHealth Strategy Office.
“Very often they are absolutely right, they need to be in the emergency department; other times I can provide some perspective to them and say in this case you don’t really need it,” he told a recent public forum held by his office and the B.C. Patient Safety Quality Council.
“It makes me think, how can we as health professionals, how can we as health organizations go online also to communicate with our patients. … How can we work together on looking at using social media as an effective medium for us to communicate.”
In an interview, Ho said the eHealth Strategy Office is interested in raising e-health literacy among the public.
“It’s not just about buying a computer or an iPad and learning the tools of social media and apps, but learning the health language,” he said.
“Just as health professionals need to learn the language of social media, the public needs to learn the language of health.”
Looking for answers
He sees patients turning to social media for answers and he says it is important for health professionals to recognize that and to help them to find the right information.
“Last night, I was looking at an X-ray on a computer and at the next computer, a couple was talking while they were waiting for the results of a blood test,” he said, citing an emergency department example.
“One was reading to the other partner what they found on social media about the condition, while they were waiting for the results.”
The joint initiative by the e-health office and the quality council, which included a daylong symposium for health care professionals along with the public forum, is the first step in a project aimed at identifying opportunities for using social media to improve health care in B.C.
Social media in health care
Who is using it and how?
Young people aged 18 to 24 are most likely to share health information through social media at 80 per cent, and close to 90 per cent would engage in health activities or trust information they find through social media, according to a 2012 consumer survey by the global professional services company PwC.
One-third of consumers in that survey say they would be willing to have their social media conversations monitored if the data could help them identify ways to improve their health or better co-ordinate care.
Forty-five per cent of consumers in the PwC survey said social media would influence their decision to seek a second medical opinion.
More than half of physicians in a 2011 Canadian Medical Association study said they have a Facebook account and are on it at least weekly.
Twitter, LinkedIn and other social networks were each used by fewer than 20 per cent of respondents in the CMA survey.
Forty-three per cent of physicians in the survey have participated in an online discussion forum on a medical or health care topic.
“We as health professionals and the health system need to understand how powerful this medium is, how engaged the public are and how do we participate,” said Ho.
The health care field is constrained by regulatory and privacy issues, so it was slow to join the social media revolution. However, social networking is playing an increasing role for both patients and health professionals.
Today’s medical students are training in a quickly evolving field.
“They are used to using technology, they are used to connecting in different ways,” said Dr. David Snadden, senior executive dean for education at the UBC Faculty of Medicine.
“As a faculty, we are interested not just in education but we are interested in researching new ways of doing things and also thinking about what health care would be like in the future.”
“We’re already embarking on a process of renewing our curriculum and thinking about what it is we have to do with our students and other learners to make sure they are prepared for the environment of health care as it is going to be five and 10 years down the way,” said Snadden.
While the B.C. College of Physicians and Surgeons and the Canadian Medical Association have guidelines for physicians’ conduct on social media and online networking forums, they focus on professional boundaries and issues that social media raises for doctors.
“What we are lacking in medical education, what we have not looked at is enabling policy to really use social media in positive ways to engage the public,” said Ho. “I think that’s the type of education we need. It’s important to say not only ‘don’t go there,’ but ‘here’s how if you go there, you can use it creatively.'” Ho said e-health will be embedded in the renewed curriculum for medical students and social media will be part of that.
Life-and-death help Can social media save lives? For a person suffering a heart attack, it could be through a bystander who happened to follow a Heart and Stroke Foundation tweet to learn ‘3 Step CPR.’ For a patient, it could be through finding others who have the same disease and whose experience may help fellow sufferers. For a patient in a B.C. hospital where sepsis protocols are followed, it can be the difference between life and death.
Christina Krause is the executive director of the B.C. Patient Safety & Quality Council. She sees value in social media as a tool that can improve health care by engaging both health care providers and patients.
Social media has helped health care professionals in B.C. connect with colleagues around the world. The quality council’s campaign to reduce the number of deaths from sepsis is an example of international collaboration through social networks.
The first World Sepsis Day in 2012 drew online participants from around the world, including many from BC. On Twitter alone, close to 300 participants sent out 1,100 tweets and made 533,285 impressions, the number of messages delivered to people.
Vancouver start-up Curatio is combining social media with professionally reviewed medical information in mobile apps designed to help people recovering from a medical problem or living with a chronic disease.
“We started referring to it as a mobile patient companion – part care plan and recovery support, and part community and peer support,” said Curatio founder and CEO Lynda Brown-Ganzert.
“We are trying to understand each use case. … Someone recovering from cardiovascular (illness) is different than someone with thalassemia,” said Brown-Ganzert. So Curatio created an app to help people deal with thalassemia, which is a chronic a blood disorder.
“We have really simple tools to make that whole tracking and management of health easier and with a community of support that’s private and secure, where you can talk to other people who are going through the same thing. It is really micro crowd sourcing in a way.”
Curatio is working with the Heart and Stroke Foundation of Canada and the Healthy Heart Program at St. Paul’s Hospital on a project to help a group of about 100 women who recently have had a diagnosis of cardiovascular disease or have had heart surgery.
“We are going to provide them with their Curatio networks as a means of providing some peer support and that care-plan type of support as well,” said Brown-Ganzert. “We’re hoping to build in a bit of remote monitoring for doctors and nurses working with the women as well.
Along with creating global connections among health care practitioners and giving them news ways of reaching patients, social media lets patients connect with other patients and with medical resources far beyond their local clinic or emergency department.
Privacy a problem
It’s a double-edged sword though, in the best cases leading to better health outcomes and in the worst case, leading to self-medication, misdiagnosis and other social media induced errors. For physicians who don’t understand the reach of social media, it can jeopardize patient confidentiality and lead to unintended consequences.
In a court case in the United States, a physician and blogger writing under a pseudonym commented on his blog about the defence strategy for a malpractice suit brought against him over the death of a 12-yearold patient. Under cross-examination, the opposing lawyer asked if he was the anonymous blogger, leading his lawyers to settle the case the next day.
Dr. Devin Harris is an emergency physician at St. Paul’s hospital, clinical lead for the BCPSQC’s stroke and TIA (transient ischemic attack) initiative and medical adviser for Stroke Services B.C. He has heard the somewhat joking comment that in the age of Dr. Google, patients see their physician for a second opinion. “As an emergency physician, we tend to see with people that when something is wrong with you or your child, you’ll look it up on the Internet before you go to emergency,” he said. “The comment that physicians are a second opinion really rings true.”
Ambulatory patients wondering whether or not they should call 911 often turn to crowdsourcing to determine what they should do.
“Everyone has an Internet connection, everyone has a smartphone. Even when people are in the waiting room, waiting to see a physician, they’ll be looking up on Google,” said Harris.
Harris said our health care system is already behind in the integration of electronic health records and various sources of information and he predicts demand from patients will force that to change.
“If we think physicians, nurses and health care providers own the knowledge of health care and own the practice of health care, we are quite mistaken,” he said. “You’ll ask your family, your friends, your colleagues about a medical issue before you seek out someone in health care and people will often use social media or online access to figure it out.”
There are issues of privacy and confidentiality but some surveys suggest patients are more concerned about the advantages of using social media than they are worried about privacy.
“I do think there are a lot of barriers, but they are not insurmountable,” said Harris. “There are already people who are early adopters within health care; these are the people who already know the potential.
“We now have to be able to transform health so that it is a shared responsibility between health care providers and the public,” he said.
Social media users in other areas have had to learn how to balance their professional and personal lives online and health professionals must practice even more care to respect the privacy and confidentiality of their patients.
Lori Campbell is a Vancouver nurse educator, who tweets as NurseNerdy. While she is now in education, she said when she was a nurse interacting directly with patients, she was careful not to breach confidentiality.
“Don’t say anything about a patient, that’s a rule I always follow,” she said. She said in medical blogs she follows, the bloggers are usually careful to point out the patient scenarios they write about are composites or not linked to a particular time or place.
“Because some of the conditions people write about are quite unique,” she said. “If you say ‘I just delivered conjoined twins and I work in Minneapolis it would be easy to identify who the patient is.”
Shaw, G. (2014, April 07). The social media ‘cure’ Retrieved from http://www.vancouversun.com/health/social media cure/9704212/story.html