Subscribe: Health JAM
Preview: Health JAM

Health JAM

Spreading the word about health care, communication and social media

Updated: 2018-03-06T02:53:38.551-05:00


Social Media Transforming Care for Patients with Rare Diseases


This post was originally published on HealthWorksCollective, an editorially independent, moderated community for thought leaders in health care. - See more at: post was originally published on HealthWorksCollective, an editorially independent, moderated community for thought leaders in health care. - See more at: post was originally published on HealthWorksCollective, an editorially independent, moderated community for thought leaders in health care.  Several years ago a member of my family was diagnosed with a rare disorder. After numerous doctor visits and a multitude of tests, we finally received a diagnosis and were able to schedule surgery to address the condition.   Among rare disease patients, my family was lucky. A diagnosis was made relatively quickly and a treatment was available.  For many rare disease patients and their families, finding a diagnosis can take years, not months, and few treatments, if any, are available.   Looking back on my experience, I’ve often wondered how social media tools might have hastened the diagnosis and improved access to treatment for my family. In fact, today, we are seeing social media transform care for rare disease patients in several ways.Facilitating Diagnosis   Though the symptoms of my family member were textbook for a particular rare disorder, our primary care physician never made the connection because he had never seen this condition in his decades of practice. But what if our primary care provider could have shared the details of the case with a large network of physicians, from a wide range of specialties? Would someone have recognized the condition because of professional experience or specialized expertise, helping us find the appropriate specialist more quickly?  Closed social networks such as Sermo and Doximity have helped some physicians crowdsource a diagnosis for difficult cases. Because they are open only to physicians, these social networks can overcome some of the privacy concerns that arise in an open social network. The limited access also ensures greater credibility.Nonetheless, open social communities, which allow anyone to weigh in, may also be useful in facilitating a diagnosis.  For example, a recent article in Wired magazine describes the case of a mother whose child was accurately diagnosed with a rare genetic disorder by her Facebook network. Though information sharing on all social networks has potential to hasten diagnosis, patient privacy issues continue to be an important concern.   Connecting Patients with Treatment, Support, Resources   The pharmaceutical industry has become increasingly interested in developing drugs to treat rare diseases, thanks in part to incentives created by the Orphan Drug Act passed thirty years ago. The incentives extended to firms by the Orphan Drug Act include expedited approval, tax benefits and seven years of market exclusivity. In 2012, the FDA approved 39 products and approximately one-third of those approvals were orphan drugs.   After an orphan drug is approved, the pharmaceutical industry faces a challenge in communicating to patients and physicians about the drug. Using traditional communication channels, such as mainstream media or personal sales calls, is not practical or efficient as patients and specialists are few in number and widely dispersed.   However, the long tail qualities of the internet make it an ideal way for pharmaceutical firms to precisely target communications to rare disease patients and specialists. The National Organization of Rare Disorders (NORD) has links to 180 patient organizations, many of whom have active social communities on a variety of social platforms.   One example of how a firm has leveraged social communities to reach patients is NPS Pharmaceuticals, which has recently received approval for its drug for short bowel syndro[...]

Engage with Grace Blog Rally 2012


This year I'm again pleased to participate in the Engage with Grace blog rally. This post was written by Alexandra Drane and the Engage With Grace team. The goal of blog rally is to get people talking about end of life issues with family members while they are still healthy, when it is easier to think through these issues more rationally and carefully.  As physician author Atul Gawande, MD, MPH noted in a November 2012 lecture at the Harvard Medical School, such discussions are about more than just end of life planning.  They represent, he observed, goals of life--a framework for life planning.  This Thanksgiving let's start planning.  One of our favorite things we ever heard Steve Jobs say is, "If you live each day as if it was your last, someday you'll most certainly be right." We love it for three reasons:1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.Most of us do pretty well with the living with intention part – but the dying thing? Not so much.And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people….Then one day it does – happen to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing - in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend. Know what you want at the end of your life; know the preferences of your loved ones.Print out this one slide with just these five questions on it. Have the conversation with your family. Now. Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner…but NOW. Have it this Thanksgiving when you are gathered together as a family, with your loved ones. Why? Because now is when it matters. This is the conversation to have when you don’t need to have it. And, believe it or not, when it’s a hypothetical conversation – you might even find it fascinating. We find sharing almost everything else about ourselves fascinating – why not this, too? And then, one day, when the real stuff happens? You’ll be ready.Doing end of life better is important for all of us. And the good news is that for all the squeamishness we think people have around this issue, the t[...]

Is Your Organization Making the Most of Twitter?


Welcome to the tenth edition of Health Care Social Media Review.  This week’s theme is the role of social media in addressing, managing and preventing chronic diseases.   According to the World Health Organization(WHO), chronic diseases, also known as noncommunicable diseases (NCD), are a leading cause of death worldwide.  NCDs encompass four main groups: cancer, cardiovascular disease, respiratory disorders and diabetes; these diseases can affect people of any age and socioeconomic group.  As Kenneth Thorpe observed on HealthWorks Collective, “the key to addressing our greatest 21st century health care challenges—controlling costs while achieving improved health outcomes—lies in attacking chronic disease.”    Beyond patient communities  Social media can be a powerful tool in addressing the challenges created by chronic diseases.  A report produced by NEHI notes that "social media sites engage and educate patients in personal health care, connect patients with their peers, implement evidence-based interventions and change behavior over time."  Writing on the HealthyComms blog for Shift Communications, Amanda Guisbond notes that our view of health care social media is often limited to patient communities that cater to those who have been diagnosed with a particular illness.   However, Amanda continues, the boundaries of health care social media are expanding.  New communities such as MeYouHealth seek to influence people before they become sick by promoting healthy lifestyles.  Amanda writes, "I love the idea that social media influences us to see health in a broader context and not as something we have to attend to once we've been dealt some bad news."  I love the idea too. The influence of social media is also expanding beyond patient communities organized around those with specific diseases.  The State of Health blog recently profiled a new initiative targeted at youth in the San Francisco Bay area.  The Bigger Picture is a collaboration between Youth Speaks, a spoken word poetry organization, and the University of California San Francisco.  Through the program, twenty poet mentors are turning online peoms into videos to educate high school students on Type 2 diabetes and encourage them to lobby their communities to make neighborhoods healthier.  As one poet stated in the Bigger Picture introductory video, Type 2 diabetes is "no longer our grandparents' disease."  Improving the quality of health careThere is also a movement to broaden the audiences of patient communities by including health care providers.  WEGO Health invited Kelly Young, founder of the first non-profit advocacy group for rheumatoid arthritis patients in the US, to attend the Annual National Conference of the American Academy of Nurse Practitioners.  Kelly, writing about her experiences on the WEGO Health blog, noted that the experience was valuable in helping build alliances between health activists and health care providers.  Increased participation in patient communities by health care providers can help improve the quality of information found in these communities.  Participation in social media by health care providers can also provide them with important patient insights.  On the Hive Strategies blog, Jean Kelso Sandlin writes that social communities can provide patients with a sense of belonging and the ability to cope with the challenges of their disease.  However, she continues, the benefits of social communities go beyond patient support.  Interactions in social communities may reveal information that may not be addressed in face to face interactions.  At the Social Media Healthcare blog, Dr. Mark Ryan also makes the case for participation in social media by primary care physicians.  He writes, "Family medicine's bio-psycho-social approach to care, which enables us to provide capable and effective care for patients with chronic illness,[...]

Who will Drive Social Media Use in Health Care? Part 3


This is the last of a three part series examining how various groups will drive social media use in health care.  Part one considered the impact of physicians and part two discussed the role of the pharmaceutical industry.  This week’s post examines the evolving and growing role of the federal government, particularly the Department of Health and Human Services (HHS).       HHS has become an active participant in social media with its role extending well beyond regulation.  As the HHS Center for New Media observed, social media tools enhance the government’s ability to share information with stakeholders, increase public engagement and participation and improve collaboration within and across departments and agencies.    HHS: social media champion  HHS created its Center for New Media to actively promote and support social media adoption throughout the department.  The site contains extensive information for HHS agencies on why social media is important, how to get started, what tools are available and policies governing social media use.  Agencies within HHS have responded enthusiastically.  As of July 2011 there are 96 Twitter accounts, 64 Facebook accounts, 32 blogs, 24 YouTube channels, 9 Flickr accounts and 41 podcasts.  These social media channels represent a wide range of agencies within the department, including the Centers for Disease Control and Prevention (CDC), the Food & Drug Administration (FDA), the National Cancer Institute (NCI), the Agency for Health care Research and Quality (AHRQ), the National Institutes of Health (NIH) and others.       Some agencies within the department, such as the CDC, have developed considerable social media expertise.  An excellent example of this expertise is the CDC’s publication, The Health Communicator’s Social Media Toolkit.   The CDC recently demonstrated its mastery of social media with the wildly popular Zombie Apocalypse post on its Public Health Matters blog.  The post, written as a way to get the public interested in disaster preparedness, was so popular it ended up crashing the CDC website.  To date there have been 341 comments on the post.  Promoting education, engagement and collaboration  As an authoritative source of health information, HHS is using social media to educate and engage patients and clinicians on a wide range of health issues.  The campaign is an outstanding example of how the federal government has used social media campaign to communicate with and engage the public about seasonal flu vaccination.  In addition to providing information about the flu, HHS is also using crowd sourcing to create educational campaigns. The CDC’s Flu App Challenge recently awarded $35,000 to nine developers who created mobile and web apps, games and other tools designed to raise awareness and educate consumers about the flu.  In 2009 HHS sponsored a  video PSA contest on flu prevention.   Another interesting example of social media use by HHS is the AHRQ’s Effective Care Program.  This site is designed to help both patients and clinicians determine the best treatment options for a variety of diseases.  Additionally, the AHRQ allows visitors to suggest topics for upcoming treatment guides. The AHRQ also encourages sharing and promotion of its clinical information.   It has created widgets which allow clinicians and other professionals to embed links to AHRQ reports within their websites or blog.    HHS is also using social media to foster collaboration and encourage innovation among scientists and industry leaders in the public and private sectors.   Through its Health Data Initiative, HHS, in collaboration with the Institute of Medicine, is expanding public access to its abundant health data.  Its stated goal is to “harness the power of data, technol[...]

Who will Drive Social Media Use in Health Care? Part 2


This is the second of a three part series examining how various groups will drive social media use in health care.  Part one considered the impact of physicians.  This week, I examine the evolving role of the pharmaceutical industry.   Though pharmaceutical companies have been slow to embrace social media, their usage will accelerate as a result of increasing clarity in regulatory guidance, industry advocacy, the growing influence of online health information and changes in pharmaceutical marketing tactics.Lagging regulatory guidance, growing industry advocacyPharma’s lag in the adoption of social media has been due largely to a lack of guidance from the FDA.   In November 2009 the FDA hosted a public hearing on social media use by pharma; however, it has delayed issuing final guidance several times.  Most notably, the FDA just dropped social media from its 2011 guidance agenda.  Despite the delays, Tom Abrams, director of FDA’s Division of Drug Marketing, Advertising & Communications (DDMAC), maintains that publishing guidelines is the highest priority. In the absence of FDA guidance some firms are creating their own policies.  In August 2010 Roche disclosed its social media principles.  AstraZeneca followed in December 2010 with the publication of a white paper outlining its guidelines for social media use by the pharmaceutical industry.  More recently, in May 2011, medical blogger Dr. Bertalan Mesko launched the Open Access Social Media Guide for Pharma.  The goal of the project is to allow collaborative creation of guidelines that pharmaceutical companies can use to develop and refine their own policies.  Lack of FDA guidance may have slowed adoption of social media by pharmaceutical companies but it has not halted it.  Social communities as a source of health informationAccording to the Pew Internet and American Life Project, patients are turning to online social communities for information on illnesses and therapy.  As noted in the blog eyeonfda,  if pharmaceutical companies do not participate in this space they will be allowing their brands to be shaped by outside forces.  The use of branded social communities, executed responsibly, can be a win-win situation:  social communities can provide patients with credible medical information about managing their health and pharmaceutical companies can build valuable relationships with patients; however, this potential has not been realized.  Many firms do not currently allow unmoderated patient comments in their social communities due to regulatory and liability concerns.In August 2011 pharmaceutical firms will be forced to address the issue of community moderation.  Effective August 15, Facebook will require that unmoderated comments be allowed on all company pages, including those maintained by pharmaceutical firms.   Some predict pharmaceutical firms will abandon Facebook; however, there are signs that others will stay. Janssen already allows patient comments without pre-screening on its Psoriasis 360 Facebook page.  In July 2011, at the Social Communications & Healthcare Conference in New York, Ray Kerins, VP, Worldwide Communications for Pfizer, commented that Pfizer is planning to maintain its Facebook presence and has developed a plan to deal with the new Facebook policies. While the August 2011 deadline only pertains to Facebook, it will certainly shape the industry's use of all social platforms.  Beyond patient engagement, the pharmaceutical industry may also turn to social media as a way to connect patients to clinical trials.  A recent white paper by Blue Chip Patient Recruitment addresses the use of social media in this area.  Recently, Pfizer announced it will use social media to engage patients during an upcoming clinical trial.  Changes in promotional tacticsPharmaceutical firms will expand their use of[...]

Who will Drive Social Media Use in Health Care? Part 1


In his blog post titled Social Media in Health Care:  Barriers and Future Trends, author John Sharp notes that social media has invaded health care from at least three fronts:  startups, patient communities and medical centers. These three groups will continue to drive and expand the use of social media in health care over the next five years.  However, I believe other three other groups will also exert influence and expand use: physicians, pharmaceutical and medical device manufacturers, and the federal government. Over the next three weeks, I'll examine the impact of each of these groups on the future of health care social media.This week I consider the evolving influence of physicians.  Physicians have not been active in social media for several reasons:  lack of clarity on appropriate use of social media, slow adoption of information technology, and payment schedules that don't reimburse for patient conversations.   These factors are becoming less of a deterrent to the use of social media by physicians. Crystallizing professional guidanceMajor organizations such as the American Medical Association are issuing guidelines to help clarify the appropriate use of social media by physicians. Influential physicians who are active in social media, such as blogger Dr. Kevin Pho of KevinMD and Val Jones of Better Health, also provide useful guidance and lead by example. The newly established Mayo Center for Social Media also explores the appropriate use of social media by health care professionals in its blog series titled Friday Faux Pas and in its video project, The Doctor is Online: Physician Use, Responsibility, and Opportunity in the Time of Social Media. Impact of telehealthThe American Telehealth Association (ATA) defines telehealth as "remote healthcare that does not always involve clinical services. Videoconferencing, transmission of still images, e-health including patient portals, remote monitoring of vital signs, continuing medical education and nursing call centers are all considered part of telemedicine and telehealth."   According to a survey of 2000 US physicians, 7% use online video conferencing to communicate with patients.Use of telehealth technology is expected to grow because it provides a way to improve physician productivity and enhance the quality of care. A recent study by Kaiser Permanente found that among 35,423 patients with chronic health conditions, those that used email to communicate with their doctors saw a statistically significant improvement in health effectiveness measures.   Dr. Ron Dixon, Director of the Virtual Practice Project at Massachusetts General Hospital, also noted that information technology offers the ability to improve coordination of care among various providers.Expanded reimbursementA nationwide phone survey of 72 programs offering telehealth services by AMD Global Telemedicine, supplier of telemedicine technology found that more than half are currently receiving reimbursement from private payers. Private payers currently reimburse for telehealth programs in at least 25 states.   According to the survey over 100 private payers currently reimburse for telemedicine services.  A survey conducted by the Center for Telehealth & eHealth Law found that 39 states have some reimbursement for telehealth services, though the extent of coverage depends on many factors.  Similarly, the Centers for Medicare and Medicaid Services (CMS) also provides limited coverage for telehealth services. Recently, however,  the ATA sent a letter to CMS Administrator Dr. Donald M. Berwick, asking the U.S. Department of Health and Human Services, of which CMS is a part, to  waive restrictions for telehealth services under Medicare Parts A and B.Social media safe havensAdditionally, the increasing popularity of secure “communities” where physicians can exchange clini[...]

Who's Responsible for Childhood Obesity?


The San Francisco City Council recently banned toys in children’s fast food meals but the ban won’t fix the problem of childhood obesity because it doesn’t address its root causes. Childhood obesity, like adult obesity, is the result of numerous factors converging to create the perfect public health storm.Children are moving less Children spend more time engaging in sedentary activities such as playing video games or spending time online.  This is compounded by the fact that physical education programs and recess have been cut from many school programs.  Yet numerous studies have shown that physical activity has a positive impact on the academic performance of children. Children are eating fewer home cooked mealsFrequent family meals have been shown to increase fruit and vegetable consumption and reduce consumption of sugar sweetened beverages.  (1)  Yet away from home foods have been associated with foods that are less nutritious (higher in fat, lower in fiber) and have larger portion sizes.  (2)  Despite the unfavorable nutrition profile of away from home foods expenditures on these types of foods has been increasing.  Nearly half of families have reported consuming restaurant food at least once weekly.  (3)   Furthermore, the amount of time spent preparing food among US households has decreased for two reasons:  less time available for food preparation and lower time costs of food preparation.  The Economic Research Service report  Who has Time to Cook found that the amount of time spent preparing food decreased as the number of hours worked increased.What are the implications?Childhood obesity can be especially costly since it can lead to serious health conditions that have a lasting impact.  Children who are overweight and obese are at increased risk for hypercholesteremia, dyslipidemia, hypertension, insulin resistance, impaired glucose tolerance, Type 2 diabetes and depression.  The likelihood that these health conditions persist is quite high since the probability of childhood obesity continuing through adulthood increases from 20% at age 4 to 80% in adolescence.  (4)The solution to childhood obesity will require the efforts of multiple stakeholders:  schools need to serve better food and make physical activity a part of the daily curriculum, parents need to take the time to choose foods more carefully and make family meals a priority, even employers have a vested interest since the children of employees are covered by employer sponsored health plans.  Finally the government, at state, local and federal levels, needs to continue to educate the public through programs such as Let’s Move and create incentives that encourage schools to serve healthy foods. Who’s responsible for addressing childhood obesity?   The answer is easy:  everyone.  The solution is not.Citations:  (1) Fulkerson, Jayne et. al. “Family meals:  perceptions of benefits and challenges among parents of 8-10 year old children.” Journal of the American Dietetic Association (April 2008): 706-709. (2) Greenwood, Jessica and Stanford, Joseph.  “Preventing or Improving Obesity by Addressing Specific Eating Patterns.”  Journal of American Board of Family Medicine ( March-April 2008): 135-140.(3) Ayala, Guadalupe et. al.  “Away from home food intake and risk for obesity:  examining the influence of  context.” Obesity (December 2008): 1002-1008. (4) American Academy of Pediatrics, “Prevention of Pediatric Overweight and Obesity,” Pediatrics (August 2003):  424-430.       5S7EJ9J8KR5Y[...]

Making Progress on Men's Health


It's Men's Health Month and a good time to consider male health issues.  Men’s health is frequently overlooked despite the fact that men die five years sooner than women and have higher mortality rates from the leading causes of death.   Understanding the health seeking behavior of men, how they communicate and what influences them is key to eliminating the health gender gap.It's true: men go to the doctor less frequentlyA recent report from the Agency for Healthcare Research and Quality (AHRQ) found that men were 24% less likely to visit the doctor than women over the course of a year.  Male cultural values may be a factor in whether men visit their doctors but research suggests patient dissatisfaction with the office visit may also play a role.A study conducted by researchers at the University of Michigan found that a majority of African American men reported they didn’t go to the doctor because visits were stressful and physicians didn’t provide the information they needed to make lifestyle changes.  Researchers suggested doctors offer more practical information to help all men follow physician recommendations.  Some useful online resources which address men’s health include:Blueprint for Men’s HealthCDC: Men’s HealthMen’s Health NetworkAHRQ:  Healthy MenTalk like a manUnderstanding the subtlety of male communication is also critical to improving men’s health.  Joe Zoske, a health communication instructor, suggests focusing on numbers and using metaphors that resonate with men.Additionally, Will Courtenay, PhD, a specialist in men’s behavioral health, has developed the following 6 Point HEALTH Plan to guide clinician’s conversations with men:Humanize: explain to men that their concerns are normal, not a sign of weaknessEducate: take some time to explain; men may be less knowledgeable about health issues compared to your female patients.Assume the Worst:  men tend to underestimate the severity of their symptoms; gently probe to gain an accurate assessment of their clinical conditionLocate Supports:   work with male patients to identify supportive individuals and groups  who can help them manage their health issuesTailor Plan:  work with patients to create a realistic health plan that focuses on a few achievable goalsHighlight Strengths:  take advantage of male patients’ competitive attitudes to help motivate them about their healthNagging worksThe influence of spouses on men’s health should not be overlooked.  According to a survey of male patients from two primary care clinics, researchers concluded that targeting women is an effective way to change the health behavior of men. (1) This conclusion was validated by a second study which used patient reminder mailings from health insurers to encourage men to seek preventive health care.  When reminders were also mailed to spouses or partners there was a significant increase in the number of men scheduling preventive care. (2)A national health priorityOn June 16, 2011 the National Prevention, Health Promotion, and Public Health Council announced the release of the National Prevention Strategy , a  plan whose goal is improve the health of Americans by focusing on wellness.  For this strategy to succeed, all of us, businesses, educators, health care providers, and individuals,  must do a better job communicating with and motivating men about their health.Citations:(1)   Norcross, William, Carlos Ramirez and Lawrence Palinkas. "The influence of women on the health care-seeking behavior of men." Journal of Family Practice (1996): 475.(2)    Holland, Denise, Don Bradley and Joseph Khoury. "Sending men the message about preventative care: an evaluation of communication strategies." International Journal of Men's Healt[...]