Social media: The game changer

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Almost 12 years past cancer, I'm in the best physical shape of my life. I've never felt better, had more energy, or intellectually felt so alive, yet at the same time been so discouraged by our country's inability to effectively tackle our collective health problem. So I decided to change the channel. I signed on for the inaugural "SXSH Sharing. Exchanging. Social Health" event held on March 11 in Austin, an "unconference" that brought together an extraordinary group of social media/health care thinkers, enthusiasts, and leaders who talked about what can happen when social media and health care come together.What a difference a day makes. Social media is stirring a level of change equivalent to the advent of the automobile in the last century. Just like the car changed life in the United States forever by providing people the ability to travel from place to place, social media makes it possible for different communities of individuals to exchange views and knowledge in real time. Right now. We no longer have to depend solely on our doctor or drive to the bookstore for critical information that may already be outdated. We can find what we need to know today.Livestrong CEO Doug Ulman told the group that "social media will change the war on cancer and health care forever." It already is, from institutions like the Mayo Clinic and National Cancer Institute exchanging tweets and information with followers to patients seeking input on the effects of chemotherapy. In less than a year on Twitter, I've developed my own news network so I can monitor reports on cancer, patient advocacy groups, news, and literature, something that would be difficult to manage without social media. I talk to doctors, fellow survivors, writers, bloggers, and journalists. There's no way I could have met so many interesting people in such a short time through conventional means. Another way of looking at social media's potential in addressing health care issues came from Greg Matthews, director of Humana's Innovation Center. Matthews says that "...the relationship revolution" created through social media will assist insurers in motivating people to change their lifestyle. "I came to the realization that, as insurers, we are part of a sickness industry, as opposed to a health care industry," Matthews said. "So, one of our questions is how we engage people in healthy minded communities." When things we should do, like exercise, are transformed into something that's fun to do--via social media--then we can make significant steps toward disease prevention. Given the current health of our population, the application of technology to move people to change is good news. But Humana's programs were just one aspect of the entire #SXSH dialogue. Even a week later, participants continue to write, discuss and elaborate on conversations initiated there. Social media accelerates ideas and good ideas accelerate change. So even if the actual number of those who physically attended was small--around 80--the idea avalanche is just beginning (for a fact recap, see http://reedsmith.posterous.com/a-week-after-recap-of-sxsh). Some of the trends we'll see social media accelerate:1) Patient driven

Social media provides cancer survivors a forum to have their concerns, problems, and questions heard, answered, and addressed. Jenn Texada of M.D. Anderson Cancer Center gave some incredible examples from her vantage point as M.D.A.'s Twitter "voice." More and more hospitals are beginning to use platforms like Twitter to address customer service issues. 2) Prevention, prevention, prevention

Doug Ulman also pointed out what many of us in the cancer arena already know, "it's about prevention. There is no one cure for cancer. Cancer is more than 400 different diseases." While we will see advances in treatments, the key will become the prevention of future disease.3) Participatory Medicine

You can get real answers in real time. The more we, as health care consumers and advocates, learn and take responsibility for our own health, I can only believe that our health care will improve. While patients want their health care team to be accountable, we--in turn--need to do the same, and I don't mean financially. By this, I mean understanding and engaging in healthy behavior, preparing for appointments (do you keep a list of the vitamins and medications you take?), and keeping track of our records, tests, and results. And yes, electronic medical records will become a reality. To keep up-to-date on this topic follow @epatientDave at http://epatientdave.com/.The "unconference" culture was the essential antidote I needed for a battery recharge. #SXSH is about the collective idea(s) and energy generated when ideas are shared among equals working on the same team. The experience moves, motivates, empowers, and engages everyone. Ideas flew like rockets throughout the day. I was welcomed like an old friend even though this is a new area to me, an attitude we can all carry to take on cancer wherever we are. Note: #SXSH was organized by four individuals: Shwen Gwee (@shwen), Dana M. Lewis (@danamlewis), Reed Smith (@reedsmith), and Tom Stitt (@tstitt), who met through a virtual conversation held every Sunday evening about social media and health care. They met for the first time in Austin. Sponsors included St. David's HealthCare, MD2P.net, wegohealth, IMC health & wellness, and Vertex. Jody Schoger is a writer and cancer advocate living in The Woodlands, Texas. She explores women's cancer news, information, and essays on her blog http://womenwcancer.blogspot.com. Follow her on Twitter: @jodyms.To read more on how social media is changing the outlook for cancer patients, survivors, caregivers, and health care professionals, read "Friends in Need" from CURE's Spring 2010 issue.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
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Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
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