Reach For Your Best!

As a 4th grader in Jackson Mississippi, Ivor stood outside a hospital room and listened to her father scream, “Let me go…let me go…” as three men held him down for a spinal tap.  In that moment, she made her decision to become a physician, “I didn’t want to feel that disempowered again,” she states.  Her decision to work as a health communication researcher evolved from this experience as well, “I didn’t want other kids, I didn’t want any patients … I didn’t want any other families to feel that way either.”

Dr. Ivor Horn’s journey from Jackson to Washington, DC and to an Associate Professorship in Pediatrics at Children’s National Medical Center and George Washington University School speaker-ivor-horn-lgof Medicine included hardship and courage.  Only in medical school did she discover that her family had been homeless at one time, “the fact that no one told me I was poor or homeless …gave me the freedom to not put boundaries on what I could do,” she writes.

This is why Dr. Horn maintains a clinic in one of the poorest areas of Washington, DC:  Ward 8.  Some facts highlight the need in this area of DC: the obesity rate in Ward 8 is 42%, even higher than Jackson Mississippi and the average family income is $10,000 per year.   “The families I see experience challenging home lives a lot like that which I experienced growing up; I can look a kid in the eye and say with conviction that I know exactly what he is going through….” At her community health center, no one is turned away because they can’t pay.

As a physician, Dr. Horn is tested by her clinic’s schedule, “Our schedule allows 10-15 minutes per patient with a little extra time for complex patients…. those with multiple medical conditions that need multiple services.”  So she empowers her patients with her four rules:  “1) Sit down. 2) Listen, 3) Let them know we are in this together.”  And her final, the “doorknob rule- “You can stop me anytime during the visit, even if my hand is on the doorknob.”

Pediatricians need strong partnerships with parents.  What she has learned in her practice and her health communication research is that, “patients are more likely to follow a health plan they helped develop than one dictated to them.”  Her experience tells her that, “Managing a chronic condition like asthma is about what you do every day, not just during a crisis. Give patients and caregivers tools that make management part of their routine. That means asking about THEIR routine,” she says.

Now she is sharing this knowledge with health care innovation designers in what she calls ‘Inclusion by design.’  She defines ‘inclusion by design’ as “A conscious effort to include the minorities who need disruption of health care, IN the innovation, development, and design process.”

To Dr. Horn, it’s really a no-brainer. As she points out,   “Minority communities are actually early adopters of technology. They own more cell phones and are greater users of social media.”

Yet she is frustrated that, even though there is a wide variety of health IT out there, much of it is not reaching minorities or the underserved.  In a presentation at the Healthcare Experience Design, 2013 conference, Dr. Horn gave a step-by-step description of just how to reach more of the underserved with innovations.  For example, she pointed out that personal connections are key and active listening is necessary.  Developers need to communicate and collaborate with minority communities on innovation solutions.  “Trust and listening matter in health…and they matter in the design process,” she says. “Companies need to look to minority developers and Health Care Providers who are in the community already,” Dr. Horn states.

Dr. Horn recommends that designers start small or locally and then scale up.  When HIT designers bring up the barrier of cost or money, she makes the important point that bringing innovations that help those who need it most will, in the long run, reduce health care costs for everyone.

Dr. Horn practices what she preaches,  “When my patients see me in their neighborhood, it matters,” she says.  When she recommends apps for teenage patients with asthma “Their eyes light up and they feel empowered.  I’m on their turf.”

Knowing where her patients are coming from makes a huge difference. “I know what it’s like to have your phone or your electricity turned off.” And being a role model is important. “I know how important it is for my patients to see someone who looks like them and who tells them, I’ve been where you are and there is no excuse for you to not reach for the best.”

And that’s just what Ivor Horn has done since that fateful day in Jackson, Mississippi.

Content from:

#HCHLITSS Tweet chat transcript

Presentation at HealthCare Experience Design 201 Conference 

Dr. Ivor Is In:  MyBrownBaby Blog

 

 

 

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“There Is No Health Without Mental Health”

@DocGroucho“There is no health without mental health. I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term.”

“Suicide is the 10th leading cause of death. The third for some children. It’s a public health issue.” April Foreman, PhD

Dr. April Foreman is not your average psychologist. She is an innovator and an extremely determined woman, especially when it comes to Veterans and social media. “I love serving Veterans in my role as Suicide Prevention Coordinator at my VA. Love innovating ways to give good care.”

That’s why she and her VA team went the extra mile to get her to a WiFi enabled Starbucks for a twitter chat. “I had to drive back from New Orleans and my government car wouldn’t start. My VA team knew about this chat and …helped me call the tow and get a new car in record time, so I could get to a place with WiFi! Many of the people I work with are Veterans…And they know how to work as a team!”

Foreman describes her job search which led to her employment this way, “At the VA, everyone I spoke with understood the value of connecting providers, patients and their health care system using personal technology and “’new media.’  In mental health care we understand it is the relationship that heals, and I knew that I needed to work in a place that understood the importance of life-long patient relationships. A place that would do anything, even brave the Web 2.0 frontier in health care, to do this.”

In the same post, Dr. Foreman states that she knew she wanted to be a psychologist since fourth grade. “Easing pain – even just a little bit – one person at a time has always been my personal mission,” she says.

Dr. Foreman uses social media to educate and inform. This is because social media is “where Veterans are,” she says. “Veterans operate by word of mouth. Social media is a natural extension of that.”

Dr. Foreman appeals to Veterans this way, “How do we build strong connections with you? Connections that might save your life or save the life of a Warrior you care about? There is me, there is you and woven around us there is this “system.” How do we build a bridge over it all and connect?”

She believes that technology is the answer. “We can use IT to reach out to people who feel suicidal. We no longer have to wait for them to call US.”

In fact, she points out that there are efforts occurring at this moment in social media. “Right now, Facebook users can tag concerning posts and get those posts reviewed by a national suicide prevention crisis center. We can also use smart phones to track mood, send data to Health Care Providers…maybe even predict changes in suicide risk.”

One of the difficulties Dr. Foreman faces in her efforts to use social media in psychology is provider attitudes.  The “biggest challenges [to using social media in psychology] are attitudinal. FEAR, very irrational, mostly by providers and system administrators.”

Concerns about privacy is also a common response from providers. But according to Dr. Foreman, “Well, the knee jerk reaction [is] that all tech is a “HIPAA” violation, or unethical…but they can never say why. Fear about confidentiality, and fear about crisis/suicide risk.  Fear about ‘boundaries’ and provider privacy. I also think many mental health providers tend towards being face-to-face and low tech. They feel uncomfortable with tech. Avoid it.”

Yet the benefits are great according to Dr. Foreman because she believes that psychologist could be “using technology to target risk-related content and bring crisis resources TO people in need.” Dr. Foreman also believes other providers need to become involved in social media and health 2.0. ““Primary Care Providers provide 80% of mental health care. Usually the last provider to see someone before suicide.”

“Humanistic providers have an obligation to use their social media presence in appropriate ways for patients.” There are reasons for Dr. Foreman’s vehemence. One moment of irrational sadness and a life is lost. It’s “very heartbreaking….Many people who die by suicide were not thinking rationally. A short, irrational, impulsive period.  It is preventable. It’s why I do what I do.”

For those providers who are concerned about using social media, Dr. Foreman suggests putting together a social media policy and sticking by it. Dr. Foreman created a social media policy which include personal rules for friending and contact requests from current and former clients. These policies help to respect privacy of both client and therapist. She has published them on her website.

There are other benefits.  “I also use socialmedia to network with a wider network of professionals. Bring knowlege to my patients. I’ve often helped patients use social media to connect to resources support during a therapy session.”

Another barrier to widespread use of social media technology in mental health is that  “More providers need education about [social media].  And to be paid when we use it as legitimate intervention….Health Care System administrators need education on the way I can scale care by having patients use technology to monitor and share symptoms.”

“I’d like communications technology to allow me to send a suicide risk assessment to someone in crisis and have that data go right into a medical record, to be seen and tracked by all providers. Primary Care Providers, too.  I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term,” Dr. Foreman proposes.

Clients that Dr. Foreman work with are Veterans of the Iraq and Afghanistan wars. “Many Iraq/Afghanistan Vets feel isolated from other peers their age.  They have done and seen things they can’t discuss very often, [it’s] hard to feel a part of civilian life.   Many Iraq/Afghanistan Vets served in the National Guard.   [They’re] not part of continuous military community. Not really civillian though.  Many of our newest Vets are having difficulty translating military experience into civillian jobs.  [It’s] very stressful.”

The Veterans Administration has put some important measures into place to serve these Vets.  “The VA has preventive and supportive measures in place for the newest combat veterans, especially their feelings of isolation. The VA has special case managers that track Vets from these wars, keep them connected with services.  VA and VetCenters also try to have support groups focused on our newest Vets.”

april-foremanWEBSocial media is valuable to Veterans. “I find that they like knowing they can get support after they leave our session. Portable support amazing….Many kinds of support are a Twitter hashtag, Face Book page, google search away….” she relates.

Suicidal ideas can be associated with homicidal ideas. “Many times, when I see someone in crisis, they have conflict in their relationships, and want to hurt both self, and others,” Dr. Foreman states. Yet she clarifies that having ideas does not mean someone is making a plan. “Ideation can be normal….We are mostly born with an aversion to killing ourselves and others. Have to erode this to harm self or others.” It is only through watching or experiencing violence that people “acquire capability” to harm themselves or others.

One of the tools that Dr. Foreman has used in her practice is an app which allows clients to record their feelings on a daily basis. One reason why self-tracking, using apps, is helpful is because “pain/mood make it hard to accurately think back and self-report. Daily tracking is much better.” When the client self-tracks, the information can be used by the provider for prevention.  “We can prevent suicide by lowering [the] lethal risk during [the] period of intense emotional pain when you can’t think straight… clear thinking [is] often derailed in crisis,” she states.

When someone starts talking about suicide, what should you do?  Dr. Foreman says, “ I take that talk seriously, and am VERY glad to talk about it. To know and to help.  Listen to the talk. Address immediate safety first. Get help and a consultation.”  She also provided the link to the Nation Suicide Prevention Lifeline .  She said, “Veterans who use our Veterans Crisis Line will get a follow-up call from a VA provider like me within 1 business day. ”

One of Dr. Foreman’s desires is something that anyone reading this blog can do.  Share the links to the National Suicide Prevention Life Line and the Veterans Crisis Line and keep the public discussion of suicide going.  “Reach out!” she advocates.

Based on #HCHLITSS The Health Communication, Health Literacy and Social Sciences twitterchat.

A “Talking Dog” Keeps Seniors Safe and Happy: Introducing GeriJoy

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Ever talked to your dog and wished she would talk back?  Well, now there are some seniors who are talking to their dogs and getting an answer.  It’s all because of the hard work and dedication of an MIT Mechanical Engineer, now entrepreneur with a big idea.

GeriJoy is the brainchild of Victor Wang and it was born out of concern for his own grandmother.  Alone, homebound and isolated from family and friends in Taiwan, Wang’s grandmother started talking about suicide.  Wang started working.

Wang is no ordinary grandson.  At the age of six, Wang was programming role-playing games for MS-DOS.. He received a Bachelor of Applied Science from the University of British Columbia, majoring in Mechatronics Engineering and minoring in Commerce, and was awarded the Wesbrook Scholar designation. After working in environmental research, aerospace manufacturing, particle physics, medical robotics, and being an officer in the military, Wang won the Canada Graduate Scholarship and earned his Master of Science at MIT. There, he researched human-machine interaction for the NASA space telerobotics program.

Victor_Profile_Portrait

With this background in telerobotics and human-machine interaction research, Wang decided he could make a difference for his grandmother and thousands of elders and their families.  But first he’d need to do some research.  Live pet therapy research described the benefits of animals for seniors, but Wang knew his own grandmother wouldn’t be able to care for a live pet. “Pet therapy has proven mental health benefits,” Wang says.  “Same with artificial pets.”

The human-machine interface is tricky, especially for those with disabilites. Wang learned this first hand as he tried to communicate with his grandmother over Skype.  Realizing that many seniors, are not technologically savvy, Wang decided that his virtual companion would need to have a unique interface. GeriJoy was born. “We make talking dogs for lonely seniors. They are apps on a tablet, but think of them as a friend in a picture frame. Just talk,” he says with a grin.

But GeriJoy is not just a “talking dog.” “ We keep it engaging by driving conversation through our live human staff [providing] true intelligence and compassion,” he says. “[The puppy is a] real buddy, not boring.  We’re turning senior care on its head with a companion that seniors care FOR [and] feel responsible for. [There is potential for] Huge mental health gains.”

Funded by investment angel, Esther Dyson, Wang presented GeriJoy at the Connected Health Symposium in Boston in October 2012.  The product launched in December 2012 and is available now.  Below is a video of a senior in a nursing home facility interacting with his “Buddy.”


The product has the potential to bring families together. “We connect entire families by having the pet talk about family photos, updates, memories. Engagement is compounded by family content in the form of photos and updates which the pet presents in conversation,” Wang says. 

The human staff is available through the talking puppy 24 hours a day, 7 days a week.  Although it is an “entertainment” device, it is proving its worth in ensuring the safety of seniors.  According to Wang, “We detected our first incidence of caregiver abuse (screaming at the senior woke up the GeriJoy Companion) and reported it to the customer, who ended up ending the offending caregiver’s contract early and getting replacements based on our advice. Pretty powerful impact for an adorable little puppy.”

For more information on GeriJoy, please visit the website.

This article is based on #HCHLITSS twitter chat transcript, email correspondence and discussion at the Connected-Health Symposium 2012.

What Inspires You to Get Healthy? Hea!thrageous Is Listening

Did you know that nearly 40% of the doctors that are in practice right now are 55 years old or older?  About a third of the present nursing workforce is 50 years or older and 55% are considering retirement in the next 10 years.  That comes to a shortage of about 100,000 physicians and 300,000 nurses in the near future.

Sixty-six million Americans are in the baby boom generation.  They were born between 1946 and 1964 meaning they are between the ages of 66 turning 67 in 2013 and 48 turning 49 this year.

These numbers may not seem like anything to worry about…they’re just numbers, right?  Wrong.  What will happen when there are even fewer physicians and nurses available to treat and to monitor patients?  After approximately 50% patients right now are not complying with their treatment or taking their medications as prescribed.

0d55210Mary Beth Chalk is one of the people thinking about these figures and trying to create solutions now.  One of the areas she focuses on is the time between office visits. “The negative spaces of treatment are what happens between office visits…Treatment is what occurs in the office – managing is what a consumer has to do once they return to their lives…. think what technology can do to paint in the negative spaces of treatment! ”

Partners Healthcare has a lab that is searching for how we can solve the problem of not enough doctors for all the baby boomers.   Connected-health is one of the answers. “If we measure something about you and feed it back to you in a contextually relevant way, then we can motivate you to a healthier state,” says Dr. Joseph Kvedar, Director of the Center for Connected Health.  He is also co-founder with Ms. Chalk of Healthrageous, an m-health company that is an off-shoot of the Center at Partners Healthcare.

Ms. Chalk is also the Chief Engagement Officer at Healthrageous and she’s been learning a lot about what motivates people.  “We found that very few people are inspired to ‘manage their condition.’  Health is a requirement to realize hopes and dreams,” she says.  Patients must manage their health through medication or lifestyle changes, “what if [managing] is placed in the context of “’living’… what if we could join with and support their aspirations for their lives – rather than placing a burden of ‘managing’?”

Since Healthrageous’ was incubated inside of the Center for Connected Health –they are part of the tele-monitoring work that is being done there.  However Healthrageous is “leveraging personalized computing, biometric feedback, home_how_1segmentation, and digital coaching to help people be successful.”

“Our work is currently focused on monitoring and digital coaching for consumers with hypertension and Type 2 diabetes,” Ms. Chalk acknowledges.

With 59 percent of US adults looking online for health and drug information yet only 12 % of adults having proficient health literacy, self-monitoring may have significant educational benefits.  If health is made personally relevant to a person’s real aspirations, it becomes meaningful.  Self-monitoring can motivate, The patient question we ask at Healthrageous is ‘What is your inspiration for getting/being healthy?’” In other words self monitoring can teach an individual “ that my blood sugar is standing between me and seeing my daughter walk down the isle”,. Ms. Chalk states. ”Consumers are able to leverage our platform to manage chronic conditions (Type 2 Diabetes, Hypertension, etc) in a personalized way.”

Ms Chalk believes that next year, 2014, will be a new dawn in health consumerism in the US with the health insurance exchange. “Nationwide Insurance Corporation provides a discount for safe driving – what if I was incented for good health? You can scream “not fair,” yet Ms. Chalk believes that “every person can do something to improve their health.”

Are poor health outcomes the fault of the individual?  There are some who may be concerned about this idea. The Food Research and Actions Center’s review of the literature on obesity indicates that there is a greater risk of obesity for women and children (especially White women and children) of low-income who are suffering from food insecurity.) Neighborhood factors include a lack full-service groceries and farmer’s markets, expensive healthy food and inexpensive refined grain, high fat and sugary foods, greater availability of fast food restaurants, and, finally, fewer opportunities for physical activity because of crime, traffic, and unsafe playground equipment.  Research also reveals that cycles of food deprivation and overeating may also cause obesity because those who are eating less or skipping meals to stretch food budgets may overeat when food does become available, resulting in chronic ups and downs in food intake that can contribute to weight gain, especially metabolic changes that promote fat storage.  Other factors include high levels of stress and exposure to more marketing and advertising of fast food, sugary foods and sugary beverages.  Finally, the research notes that the poor have limited access to health care.

Ms. Chalk is sure that “technology will allow us to personalize the ‘something’ that we can each do to measurably improve our health.”  She suggests that “health disparities will be the engine of segmentation strategies – one size fits all no longer works.”

Are physicians and nurses ready for this revolution?  Clinician buy-in will come when Healthrageous demonstrates that “a solution can effectively engage patients in evidence-based lifestyle changes that result in improved clinical outcomes and reduced office visits, “ Chalk says.  Healthrageous is interested in “integrat[ing] physician approved alerts into their normal workflow to alert the physician…when a patient is not achieving optimal clinical outcomes.”  Finally, being able to see data trends over time is a big incentive for physician buy-in. “Physicians will have to see how new solutions improve their ability to impact patient outcomes without creating undo burden on their daily practice pattern,“ Ms. Chalk believes.

With the Baby Boomers aging, fewer clinicians and paid caregivers and 2/3 of our population overweight or obese, there is a need for many changes.  The CDC’s Thomas Frieden suggests policy changes to reduce the problem of obesity like instituting a tax on sugar-sweetened beverages; increasing subsidies for fruits and vegetables ane using zoning to keep fast-food restaurants away from schools.  He has proposed completely eliminating children’s exposure to food advertising on television.   Add to these changes the innovative technology that Healthrageous can provide and we may have a winning combination.    As Ms. Chalk says, “We are in a time of reformation! And reformations require courage and great minds!”  M-health, tele-health and connected-health initiatives can provide the support that is needed for big changes to come.

 


This summary is based on #HCHLITSS twitter chat held Thursday January 24, 2013

1) Fears, D. (2010) Retirements by baby boomer doctors, nursese could strain overhaul Washington Post  Monday, June 14, 2010 http://www.washingtonpost.com/wp-dyn/content/article/2010/06/13/AR2010061304096.html

2)  Pew, 2011 http://www.pewinternet.org/Reports/2011/HealthTopics/Part-4.aspx

3) The Food Research and Actions Center  (http://frac.org).

4) Frieden,  T. ,Dietz W., & Collins J. Reducing Childhood Obesity Through Policy Change: Acting Now To Prevent Obesity HEALTH AFFAIRS 29, NO. 3 (2010): 357–363. http://w.banpac.org/pdfs/sfs/2010/reduc_child_obes_11_04_10.pdf

50 March 20, 2012. Healthrageous CEO Rick Lee speaks at Stanford University VLAB Event: “The Uploaded Life” http://youtu.be/6_sj89cxuvo

The New Patient Advocate: Sean Ahrens and Crohnology

Crohns-Colitis-Awareness-Week-CrohnologyWe don’t really think about our gastro intestinal system until we’re hungry or we get a stomach bug.  With a stomach bug, the pain, diarrhea, lethargy, and other symptoms make life miserable.  Imagine having these symptoms as a constant in your life.  Those who have Crohn’s Disease and ulcerative colitis live with this everyday.

So what’s going on?  What causes Crohn’s and ulcerative colitis?  We know that it starts with our immune system.  The purpose of our immune system is to attack bacteria, viruses and other foreign microorganisms that invade our body.  Normally, the gastro-intestinal system contains harmless bacteria that our body uses to help digestion and those bacteria are usually safe.  Unfortunately in people with Crohn’s and ulcerative colitis, there’s a glitch.  The immune system starts to attack these digestive bacteria causing an inflammation of the intestines.  Now inflammation is a normal response of the immune system, except, in this instance, the inflammation goes on and on and starts to harm the intestines, causing ulcers, intestinal wall thickening and other symptoms.

How would a healthy active 12-year old child react to getting Crohn’s? “You’re an average, normal kid in school” and all of a sudden you start having problems with your digestive system.  That’s Sean Ahrens’ story. “It was after a course of antibiotics for an ear-infection, which I got a lot of,” Ahrens remembers.  “I’ve lived with Crohn‘s for 14 years now.”

But Ahrens hasn’t taken his diagnosis lying down.  At age 26, he is a patient activist and creator of “Crohnology” a web-based patient community with attitude, and a lot of innovation. “I’m building as a new way for patients to share health information online,” Sean relates.

Crohn’s and ulcerative colitis are part of a larger group of disorders called “autoimmune conditions.” With these conditions, the immune system goes out of kilter, attacking the body.  Rheumatoid arthritis, lupus, fibromyalgia and multiple schlerosis are just a few of these disorders.  “Once diagnosed, I…realized I had a condition to which doctors had no solution.  That was really scary.”  In fact, 40 million Americans have heard those words from their physicians, “Autoimmune conditions—CATEGORICALLY have no cure.,“ Ahrens states.

Ahrens’s reaction was to look for help outside traditional medicine.  “When your doctor doesn’t give you a solution to your problem, you don’t just say OK .  You don’t just “trust” that we (conventional medicine) know everything. You search wide and far for things that will work,” Ahrens says.  In his quest for answers, he turned to fellow sufferers.  “I started the support group because it was connecting people that I found so valuable.”

Ahrens was at University of California-Berkley by then, studying computer science, “I was always really into programming.”  At the same time his support group kept growing, “when the group got too big for every patient to remember each other’s health experience— I found it a good idea to build a solution that could scale… I saw things like Facebook, Wikipedia and realized maybe this model could apply to patients sharing knowledge, “ Ahrens says.  “Crohnology” is the name of his creation.

Currently “Crohnology” has over 2,400 patients with Crohn’s and colitis from 40 different countries around the world.

 So how should people go about finding solutions to what ails them?  Ahrens is realistic about what is available on the web, “I still think the web is a bit of a wild west when it comes to health information,” he admits, which is why he’s trying a new approach, “I’m trying to program a better way to share this information — I think it requires a new platform. “

That platform is cutting edge, “The key parts of Crohnology are health-tracking, social network, and treatment knowledge-baseWe have an online health tracking interface that lets patients update their health over time.  That health tracking can take place on the patient’s mobile phone too. Over a simple web interface, or through SMS (text messaging). patients on Crohnology can also create a treatment “timeline”.  That treatment timeline has what treatments (medicines, supplements, diets, or mind & body) taken and when.”  In other words, patient can create their own abridged medical record online with current infographics.

Additionally, Ahrens is interested in people meeting people. “Patients can choose to go by just their first name and profile photo. But that’s the lowest you can go. I believe that real name and real photo thing is a requirement sean-ahrens-headfor real connection and engagement online.”  So anonymity is not an option with Crohnology, “We give patients tools to “meetup” in person, and establish REAL relationships with other patients. This is key,” he believes.

From the data that has already been collected, Ahrens has found that patients who crohnology have 99% of their patient experience behind them, which means a lot of “story” telling vs. tracking. The web is better for constructing data-dense history.”

“My fundamental tenet is that patients are experts in their own experience, and that experience is VASTLY underappreciated.”  Ahrens believes that patient advocacy is changing.  “I think online communities are the new patient advocacy groups.  It’s like the newspaper versus online news.  The medium has changed, and so the advocacy needs to move here.  If you think about patient advocacy groups, they are still, in a way, this old model of top down information.  Patient communities allow for the social revolution that has happened everywhere else on the web to happen to advocacy. Why do we need an intermediary to connect to other patients? There is no need,” Ahrens believes.

If you are worried about patient privacy, Ahrens isn’t. “Patients can identify themselves by just their first name and profile picture.  Patients own their data: they can download, port it to another service, or delete it completely at any time. As a result of this, I can literally tell you that crohnology, is the best corpus of patient knowledge that exists on the web. If you have Crohns or colitis, @crohnology is literally the best place you can go to learn about your options.”  For people who have heard there’s no way to cure a condition, having that amount of information would be wonderful!

Ahrens’ work is being supported by angel investors like Esther Dyson.  There is interest from others.  “But  what’s great about this is I’m not really interested in the money. Yeah I want to do well, but I’m trying to change medicine.   I think that single fact radically changes what we’re able to accomplish. “

Physicians haven’t been quick to embrace patient communities. “I think it’s kind of like asking a teacher to engage in a student discussion group .  They would help add insight, but the value is the exchange of peer experience,” Ahrens feels there is a place for physicians in patient communities, “but I’m not waiting around for them to join and get involved. I’m going right to patients to help them now.”

To learn about Sean Ahrens experience with Crohn’s Disease, a video by Larry Chu has been developed and posted here.  To learn more about “Crohnology” and to stay abreast of news and updates on the site, add yourself to this site.

For a transcript of the November 29, 2012 twitter chat with Sean Ahrens  go here.

Are Patient Communities an Effective Way to Deliver Care?

Are Patient Communities an Effective Way to Deliver Care?

Dr. Andrew Watson
Dr. Jeffrey Benabio

That was the question debated at the 2012 Connected Health Symposium on October 25.  Two physicians, Dr. Andrew Watson, Surgeon and Medical Director for the Center for Connected Health and Dr. Jeffrey Benabio, Physician Director of Innovation with Kaiser Permanente faced off on this topic.  Alexandra Drane, Founder of Eliza Corporation, moderated the event.

Dr Watson presented the argument in favor of patient communities.  Noting the Institute of Medicine’s figures that $750 to $900 billion are wasted by traditional healthcare in the US, Watson feels that the face-to-face system of care needs to evolve.  With so many US patients already online, online communities are a vehicle to reach people over distance and time and the medical community has an obligation to help organize this, he said.

Dr. Benabio began with a quote from another physician “Patients running online communities are like animals running the zoo.”  Although he felt this comment both shocking and insulting, he felt that it expressed the depth of his worry.   He also voiced concern about who sponsors online communities, especially pharmaceutical companies.

After these preliminary comments each debater worked to refute the other’s points.  Dr. Watson asked Dr. Benabio for the research proving that  patient communities cause harm.  He also refuted Benabio’s assertion that all communities are sponsored.  Dr. Watson believes that patients are waiting for physicians to engage.

Dr. Benabio continued providing examples he found on the Internet  to disprove the appropriateness of patient sharing.  For example, he stated that on one site a patient stated that he had a flu vaccine, followed by a seizure.  The patient said he never gets a flu vaccine because of this experience.  Several people “liked” the comment.  Dr. Benabio believed this statement would stop people from getting the flu vaccine.

The debate continued along the same vein.

Perhaps there was a flaw in the question that was asked.  Are patient online communities really about providing care?  Or are they doing something else.  The debate  illustrates the division  among physicians and other healthcare providers concerning patient communities.  However, in the end, patients are moving forward, reaching out to each other to exchange information, support and experience.  Ignoring online communities, standing back and watching, claiming that time spent online is wasted: these are unproductive attitudes. Getting involved with online communities will not only inform patients, it will also inform healthcare providers.  Communications is key and online patient communities are not going away.

What do you think?

After taking the survey please share your thoughts in the comments.  Thank you.

Alone Together: Sherry Turkle

On “Wait, Wait Don’t Tell Me” Paula Poundstone describes her view of the neighborhood playground.

Wait, Wait, Don’t Tell Me Radio Show October 6, 2012

Transcript

Right now, panel, time for you to answer some questions about this week’s news. Maz, according to a study by the Wall Street Journal, a rise in the number of minor injuries to children might be caused by what?

MAZ JOBRANI: It’s not computer related.

SAGAL: It is, actually.

JOBRANI: Oh, the parents are not paying attention.

SAGAL: Because they are?

JOBRANI: They’re driving while being on the phone. Texting while…

SAGAL: They’re texting while parenting.

JOBRANI: Yeah.

(SOUNDBITE OF BELL)

SAGAL: This is a problem now.

PAULA POUNDSTONE: Does no one see it? Do you not see it right in front of your eyes? I don’t understand this stupid thing with the phones and the iPad and all that stuff. I don’t get it.

(APPLAUSE)

POUNDSTONE: It’s right in front of us and we don’t see it. You know what I mean? I mean, we live right near a park, and I watch people all day long, go by the park, doing this here, or talking on their phone. You know, while the kid is like hanging out of the carriage.

(LAUGHTER)

AMY DICKINSON: My mother, anyway, never paid any attention to me and she didn’t even have an excuse.

(LAUGHTER)

SAGAL: Yeah.

DICKINSON: It was like…

JOBRANI: Well if you get the kids an iPhone, you could text each other at least.

SAGAL: That’s true.

(LAUGHTER)

SAGAL: It’s like, “Mommy, I fell down a well.” Be right with you.

(LAUGHTER)

SAGAL: I mean parents who are too busy with their phones you’re not missing much. It’s like, “Yeah, I saw my baby’s third step. You know, it looked pretty much like the first.”

(LAUGHTER)

POUNDSTONE: And then the other thing is they have to take pictures of it and put it up. I don’t like that either. I’m sick of seeing the happy people’s children on the Facebook. I’m just sick of it.

(LAUGHTER)

(APPLAUSE)

SAGAL: It shouldn’t be surprising though, a lot of the parents who were texting while parenting were texting while conceiving as well, so…

(LAUGHTER)

(SOUNDBITE OF MUSIC)


Even though everyone is laughing, there is something important going on.  According to Sherry Turkle, Poundstone’s observations aren’t unusual.  Turkle, Professor of Social Studies of Science and Technology in MIT’s Program in Science, Technology, and Society and founder and director of the MIT Initiative on Technology and Self,  has been studying how technology changes minds and hearts for many years.

Dr. Turkle was one of the keynote speakers at the 2012 Connected Health Symposium October 25 and 26 in Boston.

Turkle started her presentation with a quote by Winston Churchill, “We make buildings and then our buildings make and shape us.”  She thinks it may be the same with mobile phones, mobile technologies and computers.

Based on 15 years of research and hundreds of interviews with children, teens and adults, Turkle has concluded that we need to take a closer look at ourselves, especially when teens tell her “we’d rather text than talk.” Her new book, Alone Together: Why We Expect More From Technology and Less From Each Other documents her quest to understand the relationship we have with new technologies, especially with mobile devices.

In her talk, Turkle pondered changes in relationships among parents, children, sweethearts and friends.  Perhaps, Turkle asks, we have too close a connection with our machines, perhaps behind our incessant “connecting” lies loneliness.

Basically, her thesis is that we are so busy with our connections that we are neglecting each other.  When people text at meals, at funerals, at religious functions, what is really happening? she wonders.

She is most concerned about those who should be developing conversation skills.  Her findings suggest that  people are fearful of the give and take of conversation and may be substituting “mere connection” for conversation.  As one 18 year old told her that, “I can get everything I need from g-chat.” Another teen states, “When you text, you have more time.  On the telephone, too much might show.”  Her fear is that with text messaging, the collaboration, creativity and concentration of face-to-face communication is lost.

Adolescents are sharing between 3,500 and 10,000 texts per month.  From her many interviews, she surmises that many teens use texting to confirm their feelings.  Turkle is concerned about what is being lost during all the face time with a phone.  As one teenager stated, “Someday soon I want to learn to have a conversation” while another described her efforts to learn to “try to have eye contact while texting.”

If we don’t’ teach our children how to be alone, they only know how to be lonely, Turkle believes.

Turkle’s voice, at a conference about mobile technology and connection, was illuminating and powerful.  Her words were about “health” the central message of the symposium.  The Center for Connected-Health‘s welcome to Turkle’s research was tremendous. Those who work in connected-health and telemedicine truly desire improvement in the well-being of all.  With that in mind, her work sheds light on the human condition, the need not only for connection but also for intimacy.  It sheds light on the need for balance.

What are your thoughts?  

 

Dr. Turkle’s presentation made me wonder if there is a way for health communicators and believers in all the good that connected-health can bring to help us achieve balance.   Perhaps we could tweet messages like this…

“Stop texting and start talking!”

“Set aside “no technology times” with your loved ones, you’ll love the connection!”

“Turn off the phone, (or the computer), and give your child a hug!”

In the comments section provide some feedback.  If you voted yes, can you think of other messages?  If you voted no, what are your views on Dr. Turkle’s observations?

Skinny Jeans and Menstrual Apps

Susannah Fox speaks about her mentor, visionary physician, Tom Ferguson, with fondness.  As early as 1975, Dr. Ferguson was writing and advocating empowerment for patients.  In 1987 he began providing online health resources.  As the Internet evolved, Dr. Ferguson was at the forefront of the evolution of the empowered, engaged, equipped and enabled medical consumer, the e-patient.

From Ferguson, Fox gained an appreciation of health as being just one part of life, one of the many pieces of the puzzle of life.  At the 2012 Connected Health Symposium,  even as people self-track and become engaged with their health, Fox wondered how much self knowledge is really shared with clinicians.

As Associate Director of the Pew Research Center’s Internet and American Life Project, Fox has been providing information about the social life of health information, peer-to-peer healthcare and the use of Internet by those with chronic disease for over 12 years.  Fox shared  her most recent survey findings at the symposium.

According to Fox, 60 percent of Americans are tracking weight, diet or exercise routine.   One in three adults track health indicators or symptoms and one in three caregivers track their loved ones’ health indicators.  But, how are they tracking?

Surrounded by many people who are connected, technology savvy self-trackers, Fox had the courage to admit that her own self-tracking strategy does not involve scales or batteries:  she uses the time honored “skinny jeans method.”  That is, one owns a pair of jeans that one used to be able to fit into.  Striving to get back into those “skinny jeans” is the life goal of many women, myself included.  We monitor our weight and fitness via those jeans.

Around 50 percent of those who were surveyed are tracking in their heads–they use the “skinny jeans” method.

One in three are still  using the pencil and paper method.  Only one in five use technologies like apps, websites or devices.

If the person has two or more chronic conditions, he may be tracking:  sixty percent of those with two or more chronic conditions track their health information with eight-five percent of them using a cellphone tracker.

Yet even though people are collecting data, they aren’t sharing it.  Two-thirds of data collectors do not share the data they collect.  Fox believes that this missing information may be useful to clinicians and recommends clinicians ask their patients about health tracking.

Another piece of information that Fox gleaned from her survey results is that people are not interested in apps that stand alone.  She thinks successful apps are those that are  integrated with online programs like Weight Watchers.  Weight Watchers has had 10 million downloads of their app which is integrated into the Weight Watcher’s popular support and knowledge system.

Fox’s take-away is that those who are creating apps, websites or devices need to make tracking as easy as it is when keeping up with it in the head.   She also impressed on her audience the need for innovators to create apps that are what the consumer wants to know.

So what do consumers want to know?  An interesting outlier may lead to a clue of what information men may be interested in collecting.  Her survey found that  popular apps that men are using are menstrual cycle tracking apps.   Hmm…wonder why?

Susannah Fox was one of the many amazing speakers at the 2012 Connected Health Symposium that occurred October 25 and 26. I will be highlighting the content of this symposium in the next few posts so stay tuned.

Unlocking the Individual’s Ability to Care for Themselves*

“The “biggest value [of connected health]* is in unlocking [the] individual’s ability to care for themselves!”  So says Joseph Kvedar, MD, Founder and Director The Center for Connected Health, a Division of Partners Health  in Boston, Massachusetts.

#HCHLITSS, Health Communication, Health Literacy and Social Sciences twitter chat started 2012 with a bang.  With our guest, Dr. Joseph Kvedar, participants entered into a thought-provoking and engaging conversation.

Dr. Kvedar is an innovator in the use of new technologies to connect health care providers-physicians, nurses, pharmacists and others-with patients.  Using remote health monitoring tools, the Center is involved in helping patients manage their chronic disease and engaging people in their own health and wellness.

To get the chat started and get everyone on the same footing, Dr. Kvedar (@jkvedar) answered the question, What is connected-health?

Connected health is “creating a new model of healthcare delivery by leveraging IT to move care from the doctor’s office into the lives of patients.”  The way to achieve this change in healthcare delivery is [to provide]“objective information about you, presented to you in context, surrounded by the factors that motivate you to improve your health.”

Motivation or engagement comes from the “objective info about you.  [It] holds everyone in the conversation to the same objective standard and aids in reality and accountability.”

Feedback seems to be a powerful motivator.

“Feedback loops offer active reflection, sentinel effect and ability to take action.  [With] info[rmation] about health, indiv[iduals] can ch[an]ge behavior.”

One program the Center is known for involves home monitoring of patients with Coronary Heart Failure (CHF).

“Home monitoring for CHF is a terrific example of integrating patient, nurse and physician to achieve health at home and [at a] low cost. …We’re expanding our CHF program to include acute MI (myocardial infarction) and other cardiac conditions. [We] already do HTN (hypertension or condition of chronic high blood pressure)… CHF – p[atien]ts [are] responsible for daily weight, bp[blood pressure]/hr[heart rate]. [This information] goes automatically over phone line. Nurses view dashboards,[and] do exceptional m[ana]g[emen]t.”

Another innovation developed by the Center involves improving medication adherence.

“The RX [Prescription] vitality glow cap first glows, then chimes. [It] r[e]m[in]ds U to take med[ication]s. Improved adherence by 68% in our trial!

Dr. Kvedar notes in previous presentations that there are certain people who are more likely to want to be involved in connected health.  They are truly engaged in knowing their numbers, for example, how many steps they take in one day or how many calories they use in one hour.  He calls them the “Quantified Self” population.  During the chat, he was asked


“How can connected-health get beyond the Quantified Self population to a more generalized population?” 

He believes that this can happen by “1) understand[ing] patients and their motivations; 2) giv[ing] them simple tools to track and understand the data 3) empower[ing them] to take ownership.”


Who will drive connected-health (or m-health) physicians or patients? Or pharmacists or nurses? 

                “All of the above, but mostly patients,”


Will the volume of baby boomers help “force” a move towards telemedicine if hospitals cannot meet demand?

 “I don’t know if boomers will be the sole catalyst, but something outside the system will be the tipping point.”


Another mover in the connected-health arena may be large businesses.

“Several global fortune 500 firms are getting into CH [connected-health] as we speak.”

One participant noted, “one day, soon, connectivity is gonna prove its[e]lf to be cost-effective and improving outcomes. (or: are we there yet?)”

Dr. Kvedar agrees that we are “very close to proving the value of connectivity… Especially in the context of ACO (Accountable Care Organizations).”

Following up on this comment, Dr. Kvedar was asked if our present health care cost crisis will be solved by innovation occurring outside of traditional healthcare delivery system, Dr. Kvedar replied,

“My hypothesis: the cost crisis cannot be solved from within. each dollar saved is a dollar of someone’s income lost… MDs are the last to come on board, but with new payment models, they are coming on board. 80% ready in our IDN (Integrated Delivery Network).”


Dr. Kvedar’s passion or vision for connected-health (which he admitted was tough to do in 130 characters) is

“Empower consumers to be their own doctor. It can be done.” Then he clarified by saying that “of course there will always be a need for providers. We just overuse them now.”


Although there was some enthusiasm about connected-health, participants voiced real concerns.

Concerns about connected-health that were raised by participants included:

                The digital divide:

                “Health literacy and literacy as part of the digital divide”

                “Low tech communities need most help”

“Those who are rural are the ones who may need this kind of distance support the most”

Cost of technology for the poor: “When I see personalized medicine- I think medicine for those with “resources” only”

Use of hands, eyes for text messaging

“The age ceiling to connected health”

“Risk of increased disparities”

                Where is the desire “for telemedicine in #diabetes?”

Participants also proposed solutions and or disagreed with  these concerns:

“Digital divide can be addressed several ways: provide access in clinics, libraries, community centers, or provide print “

“Use existing communication resources in the community to engage/ distribute info[rmation] this is when the value of partnerships with community health leaders and advocates becomes more vital”

“Projects provided to many people have cell phones-programs such as text4baby.org by the National Healthy Mothers. Healthy Babies Coalition can help”

“Actually at least in much of the #US, even the poor have dumb cell phones, and most have basic texting, least from what I’ve seen”

“In developing countries mobile phone technology developed where there were no landlines everything now moves on new platform.”

 Although this statement was challenged “For many in developing countries-local comm.[unity] leaders (word-of-mouth) [is] still [the] most effective source of med[ical] info

Others suggested more ways to use connected-health:

“Encouraging mentorship in online communities is a very powerful tool to give more power to the patient and their loved ones


Participants also provided useful information on the use of technology for those who have a disability.

The chat provided a forum for information exchange and opportunities for further discussion.  Finally, there was generous sharing of information among the participants. Many thanks to Joseph Kvedar, MD and all the participants in #hchlitss chat.


Wonderful links were provided by participants:

The Center for Connected Health http://t.co/quTwGzdg

Dr. Kvedar’s blog http://t.co/gnni5SC6

UC Davis eHealth Broadband Adoption: http://t.co/62wbn5Fl bridging the divide

California Model E-Health Community Awards http://t.co/Dywo8Q9s

In Canada, the Telemedine Network http://t.co/CauUkO6v has made great inroads connecting /helping esp with mental health

Also need a connected healthcare workforce where needed, when needed & tech to get them there http://t.co/Bjg0dIiX

Recent blog post ?: Can connected work in a fee for service model, or more movement in integrated system?http://t.co/wlGfzSc5

Telcare review from Walt Mossberg. WSJ tech writer with type 2 diabetes. http://t.co/vhQsSSHj

Scottish Centre for Telehealth and Telecare http://t.co/Ncfd0ICv

Project Echo- promoting care for complex diseases in rural and underserved areashttp://t.co/v3OZSDEM

Non traditional entrants into connected-health http://t.co/alxEdh5r

MyVoice is for aphasia and stroke http://t.co/byXDK5W5

Ipad apps for kids with autism @thinkingautism @shannonrosa

*Due to the twitter’s 140 character requirements, comments are shortened by eliminating articles or using shorthand.  [Braces] are used throughout this summary to enhance readability.

*Previously posted at #hchlitss  New youtube videos have been added.