12 posts from October, 2012

Leaving a Legacy of Data at PatientsLikeMe

Posted October 30th, 2012 by

ALS member Persevering in front of the US Capitol, where he was participating in ALS Advocacy Day 2011.Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants.  Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on Capitol Hill.  Persevering passed away on September 10, 2012, at the age of 42, and is deeply missed by both our members and our staff.

While we are unable to recognize every member who passes away on our blog, we wanted to take this opportunity to highlight how our community responds to loss as well share what happens to a deceased patient’s profile data.  When our community managers are notified of a member’s death – typically by a family member, caregiver or another member who was close to the person – they add the date of death to the member’s profile. This automatically updates their icon nugget with a black band to show that the member has passed away. (See image below.)

Persevering’s icon nugget – with the black band representing that he’s no longer with us after his three-year battle with ALS.

Also, our members often create a forum thread about the member, to which the tag “In Memory” is added by other members or the community manager so that it is searchable and “followable” using this tag. In these emotional threads, members acknowledge the deceased member’s contributions, reflect on the loss to the community and pay their respects.  Essentially, it’s a place for remembering a friend, telling stories, supporting one another, sharing funny memories and sending condolences to the family.

Each month, our community managers update our “In Memoriam” thread in the PatientsLikeMe forum with a list of members who have passed away during the previous month, and they include links to each profile. That way, members who haven’t logged on for a while or may have missed the news of someone’s passing can stay up-to-date.  Members can also choose to “follow” that thread if they wish to be notified whenever there is a new monthly update.

As for the profiles of members who have passed, they effectively create a legacy of data on our site, as their profile pages remain accessible to our members in perpetuity.  As a result, present and future members may continue to access these profiles to compare and learn from similar experiences.  Persevering’s detailed treatment, symptom and disease progression data, for example, will live on as a rich source of information and insight for other ALS patients.  What was his experience in the Phase II Study of NP001?  Read his comprehensive treatment history here.  What side effect led him to stop taking Riluzole?  Find out here.

Persevering’s Functional Rating Scale (FRS) data, showing his ALS progression over time.

So as you can see, Persevering is still helping others today, and we thank him for that.  We also want to recognize his contributions to our recent publication about NP001.  We have dedicated this new work to him as it was inspired by his keen desire as a “citizen scientist” to analyze and understand the impact of NP001 on his ALS progression.

As a result of these myriad achievements, Persevering will be posthumously awarded the Stephen Heywood Patients Today Award at the 8th Annual ALS Therapy Development Institute Leadership Summit on November 1st in Boston. Learn more about this beloved and influential ALS advocate by checking out the Facebook page created in his honor, entitled Persevering – You Are a Game Changer.


Putting Psoriasis on the Map for World Psoriasis Day

Posted October 29th, 2012 by

Today, October 29th, is World Psoriasis Day, sponsored by the International Federation of Psoriasis Associations.  Here in the US, the National Psoriasis Foundation has created a special website – WorldofPsoriasis.com – for the occasion that illustrates the global nature of this chronic autoimmune disease, which affects 125 million people worldwide or nearly three percent of the world’s population.

WorldofPsoriasis.com's Interactive Map of Psoriasis Patients Around the Globe.  Click Each Red Pin to Find Stories, Photos and Videos.

Now those living with psoriasis and psoriatic arthritis can “get on the map” by adding a clickable pin for their location that shares their personal stories and photos.  The goal is to get psoriasis patients everywhere to proclaim “I have psoriasis” while also learning about others like them around the globe, such as Arvin O. Ravalo from the Phillipines, Saraswati Gautham from Nepal and Dr. Andres Felipe Jiminez Morales from Columbia.

What are the physical and emotional challenges of psoriasis?  Earlier this year, PatientsLikeMe interviewed four members who are blogging about life with psoriasis in order to shed light on this highly visible and often misunderstood disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  Check out our insightful interviews with:

  • Lissa of “Psoriasis Girl’s Point of View”
  • Alisha of “Being Me in My Own Skin”
  • Jessica of “Jessica and Psoriasis”
  • Joni of “Just a Girl with Spots”

Common Psoriasis Symptoms Reported by PatientsLikeMe Members.  (Click Through to See the Full PatientsLikeMe Condition Report.)

These four brave ladies are just the tip of the iceberg, however.  2,470+ patients are sharing their experiences with psoriasis at PatientsLikeMe – including how it affects their quality of life and what percentage of their body is affected – while 840+ patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and check out the results of our recent psoriasis patient survey about the impact of summer weather.  Also, don’t miss our upcoming blog post about the five different types of psoriasis!


Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter

Posted October 25th, 2012 by

Parkinson's Disease Humorist, Blogger and Author Bev Ribaudo ("YumaBev")PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy.  “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says.

In fact, her condition has given her a new purpose:  entertaining other “Parkies” with her deep reservoir of funny stories.  She began a blog called Parkinson’s Humor, and most recently, she’s collected the tales from her blog into a book, Parkinson’s Humor:  Funny Stories about My Life with Parkinson’s (available in paperback and Kindle editions).  Find out what she’s gotten out of sharing her sense of humor in our interview.

1. Tell us about the role that humor plays in your life – and why it’s so important.

Humor has always been a part of my life. Both of my parents had good senses of humor; they needed it with five accident-prone kids. I had a lot of tragedy in my life when I was young – my first husband died in a car crash when I was 23 and my mother died of lung cancer 15 months later. She used to joke about her bald head (from chemo) and pretty much kept on laughing right up until the day she died.

My wonderful husband and I used to do comedy shows tailored for seniors. We traveled the country in a RV and did shows from Florida to Washington. I used to come out dressed as Dolly Parton and then I did a standup routine as Daisy Jane (Minnie Pearl’s niece). It was a lot of fun and we both enjoyed making people laugh.

Bev Performing as Daisy Jane, the Niece of Minnie Pearl

When my mystery illness curtailed our travels, we performed closer to home. We stopped when I just couldn’t physically do it anymore. After diagnosis, I performed various skits at the RV Resort where we lived at the time. Whenever they needed some “entertainment” they’d just call me. I now live in a house and when I found a Parkinson’s chat room early one morning, and people who needed cheering up, I started sharing my funny stories with them and that’s how Parkinson’s Humor, the blog and book, began. I have seen what laughter can do for people, and I know that laughing helps me as well.

2.  You’ve tallied 59,000+ blog visitors to date. What have you gained from sharing and connecting with other PD patients online?

More than you can imagine. I am still not quite sure how it happened, how people from countries I have never even heard of found my blog, but the feedback I get inspires me to keep writing. My wonderful husband says, “Parkinson’s didn’t take anything away from you, it gave you a new life.” And he’s right. I have learned so many things from the people I connect with online and in turn, have shared right back.

I feel like I have a whole new family of brothers, sisters, aunts, uncles and grandparents as well as a dozen or so new parents, LOL. I have one close online friend who ends every reply with “Love, Mom.” She had a daughter who was born the same year as I was, but died as a toddler and she thinks that her daughter would have looked just like me.

3. What led you to turn your funny stories into a book?

The Cover of Bev's New Book

I made the blog stories into a book for just one reason: for people who are not computer literate. I had so many people say, “I printed out one of your stories for my Dad (Grandma, Aunt, Neighbor), who has Parkinson’s. He doesn’t do computers. Will it ever be a book?”

So, I spent most of this summer making it into book form. Sales have been pretty good considering I self-published and did all the marketing myself. I donated the first profit check of $250 to my local PD support group earlier this month. I hope to get a major sponsor soon, so I can send a book to every support group in the country for their library. I will not keep any money from the book for myself; it will all be donated to Parkinson’s. I hope to have huge sales for Christmas (fingers crossed).

4.  You had Deep Brain Stimulation (DBS) surgery on October 18th. What was that like, and how are you feeling?

The first part of the surgery went very well and I am feeling very good. Tomorrow is the second part and I am told that the recovery will be longer and more painful, but I hope to feel well enough to go to a Halloween Party Saturday night. I’ve got my costume all ready (complete with antennae, LOL). There is a blog post detailing the entire surgery on the www.ParkinsonsHumor.com website right now.


Art as Therapy in Parkinson’s Disease

Posted October 23rd, 2012 by

Do you have a creative outlet that helps you cope with your health condition?  Here are two examples of Parkinson’s disease (PD) patients in our community who are expressing their emotions through painting, despite hand tremors and other challenging symptoms.  (See even more PD patient artwork in this inspiring forum thread.)

"Iggy the Iguana" by PD member mezzomom

“Iggy the Iguana” by PD member mezzomom

"Autumn Still Life with Mouse" by PD Artist J. Marley, who learned to paint with his non-dominant hand after developing tremors

“Autumn Still Life with Mouse” by PD member J. Marley

If you’re a PD patient with an artistic bent, we encourage you to share your work with our community.  You may also want to participate in the Parkinson’s Disease Foundation’s Creativity and Parkinson’s Project, which “exists to explore, support and encourage the therapeutic value of creativity in Parkinson’s.”  Paintings, drawings, photographs, songs, crafts and more are displayed in the project’s Gallery of Artwork, and a wall calendar is created each year featuring the work of 13 selected artists.

Notice of Copyright: The works of art featured in this post are displayed with the written consent of the artist and/or current owner. These parties retain exclusive rights of reproduction and distribution. Any unauthorized reproduction or download of content in any form is a violation of the artist’s copyright and is prohibited.


A Day in the Life of PatientsLikeMe Web Developer Adam Darowski

Posted October 19th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Adam Darowski, a father of three who joined the technology team as a web developer exactly three years ago.  Find out why he had a crush on the company long before he came to work here and more in our interview.

PatientsLikeMe Web Developer Adam Darowski with Each of His Kids

1.  What led you to join PatientsLikeMe in 2009?

I had been a big fan of PatientsLikeMe since late 2006 when I originally met Co-Founders Ben Heywood and Jeff Cole. Over time, it became more and more clear to me that my next position would be with PatientsLikeMe. First the company hired Kate Brigham (who I had known for quite a while), then I met people like Cris Necochea and Rich Thornett. I knew it was a special place with special people.

What ultimately led me here in 2009 was the opportunity to do some things that were very important to me. I want to make PatientsLikeMe an incredible resource not just for patients living chronic conditions, but also for parent caregivers of children with developmental and chromosomal disorders. We’ve made some progress on that front but still have a lot of work to do.

2.  Give us a slice of life as a web developer.  What are you working on currently?

We just finished Wow Week, which is pretty much my favorite thing in the world. [Occurring every six weeks, Wow Week is a week of unstructured time in which the PatientsLikeMe technology team can work on and present their own ideas.]

I worked on some concepts for what PatientsLikeMe could look like if it was focused exclusively on parent caregivers. So, this involved some user research (not a ton, since it was only a concept and I only had a week), user interface design, and a lot of visual design. Since I also love to get in the code, I then worked with Michael Berkowitz to start building it out some of the features. My main focus there was on the home page, building a design that would work well whether you looked at it on a phone or a 24-inch monitor.

During more typical weeks, my time is spent building and improving site features. I’m a “front end” guy, which means I don’t really do any hardcore software engineering. Rather, I build the part that you actually see and interact with. I also like to chip in on the design side of things, whether it is on new features or just adapting an existing design for new requirements or different scenarios.

3.  What would you tell someone who’s considering joining the technology team?

I would tell them that this is a very passionate, bright, motivated and diverse team, and I’m honored to be a part of it. PatientsLikeMe isn’t a place to go if you have a big ego. We work together, we collaborate, we give and receive constructive criticism, we strive to make each other better, and we strive to give our members the best user experience possible. If you want a genuine, honest-to-goodness chance to build something that has a chance to change the world, this is where you want to be.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking to hire a Senior Ruby on Rails / Web Application Developer, Business Development Manager, Graphic Designer and more at the moment.


What to Do – and Not Do – When Someone Has a Mental Health Condition

Posted October 17th, 2012 by

Have you ever wondered how best to interact with someone who is living with depression, bipolar disorder or another mental health condition?  Have you worried that you’re saying or doing the wrong things?

Another way to support a friend or family member with a mental health condition is to participate in an awareness walk.  Learn more about the National Association of Mental Illness’s annual walks held around the country.

Last week we recognized Mental Illness Awareness Week on the blog, and to continue our coverage, today we thought we’d share with you some of the tips suggested by our members in a ongoing forum discussion entitled “What NOT to Do with the Mentally Unwell.”

What our members say not to do…

  1. Don’t suggest activities that interrupt their regular sleep schedule.
  2. Don’t imply they are faking just because they “look okay” to you.
  3. Don’t ask if they are taking their meds every time something happens.
  4. Don’t get upset because you can’t fix it – or make it better.
  5. Don’t act like they are “made of glass” and avoid dealing with them.
  6. Don’t push the latest cure-all you saw on TV or read about.
  7. Don’t suggest that they should “snap out of it” because “it could be worse.”
  8. Don’t talk down/louder/slower as if they are a child or have low IQ.
  9. Don’t buy into the stigmas or stereotypes and forget who they really are.
  10. Don’t abandon them just because they are depressed or unwell.

What they suggest you do instead…

  1. Do give them a hug for no reason but because you love them.
  2. Do be gentle with your words and be an anchor amidst the storm.
  3. Do make chicken soup and keep the fridge stocked with favorites.
  4. Do listen and ask questions, and don’t feel like you have to relate.
  5. Do remember that it’s okay if you don’t know what to do or how to help.
  6. Do call or email just to let them know that you are there for them.
  7. Do offer to go on an evening stroll or a walk in the park.
  8. Do allow them to be alone if desired and come to you when ready.
  9. Do know that you don’t have to cheer them up – only help keep them safe.
  10. Do remember they are the same person they always were, just with a diagnosis.

Do you have other suggestions to add?  Or perhaps a different perspective?  Share your insights in the comments section, and if you’re not already a member of PatientsLikeMe, connect with thousands of others like you in our active mental health community.


PatientsLikeMe Featured on Bloomberg TV

Posted October 15th, 2012 by

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Visit our Press page for other recent PatientsLikeMe media highlights.

Watch the Bloomberg TV profile below:


Mental Illness Awareness Week 2012: Dismantling the Stigma

Posted October 11th, 2012 by

Did you know that one in four adults – or approximately 57.7 million Americans – experiences a mental health problem in any given year?  Or that one in 17 lives with a serious, chronic mental illness?

It's Mental Illness Awareness Week

Since 1990, National Mental Illness Awareness Week has been recognized by the U.S. Congress as a time for mental health advocates and patients to join together for various awareness-raising activities. Sponsored by National Alliance on Mental Illness (NAMI), the goal of this week is to transform the way we think about mental illness, which is defined by NAMI as “a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning.”

Important Phone Numbers to Have on Hand in the Event of Mental Health Crisis

Like any other medical condition affecting a particular organ, mental illness is not caused by personal weakness or character defects, and it can affect individuals of any age, race, religion or income.  As an example, some famous people who are known to have lived with mental illness include Abraham Lincoln, Winston Churchill, Gandhi, Tennessee Williams and Mike Wallace (who was eulogized by one of our members last June).  Below is a new PSA ad for National Mental Illness Awareness Week 2012 that focuses on some of these legendary icons, stressing that “you are not alone in this fight.”

But what about feeling like no one understands what you’re going through?  That’s where finding others like you – such as those with the same diagnosis (or diagnoses), symptoms or treatment side effects – comes in.  At PatientsLikeMe, we have tens of thousands of patients sharing their experiences with more than 60 mental health conditions, including:

In addition to exchanging in-depth treatment evaluations about the effectiveness and side effects of commonly prescribed medications such as Cymbalta, Klonopin or Wellbutrin, our members are connecting and supporting each other daily in our Mental Health and Behavior Forum.  Currently, there are more than 39,000 participants and more than 333,000 posts in this highly active forum, where you can find answers, empathy, humor and thought-provoking conversations day or night.

Get to know our mental health community – including what depression feels like to them or how PatientsLikeMe has helped them be more open about their condition – today.  Also, stay tuned for some tips from our community about what to do and not do when interacting with someone who is living with a mental health condition.


Rediscovering Life’s Simple Pleasures: An Interview with a Heart Patient

Posted October 10th, 2012 by

Learn About World Heart Day 2012

Last week, we recognized World Heart Day on the blog and discussed why there is an urgent need for awareness about heart disease and stroke, the world’s number one killer.  We also talked about how heart disease can be an abstract concept until you are exposed to someone’s personal story.

That’s why we are pleased to introduce you to Alan, a PatientsLikeMe member who is living with congestive heart failure (CHF) following a heart attack.  A few years ago, he had a left ventricular assist device (LVAD) – or a battery-operated mechanical pump – surgically implanted to help his heart continue to pump blood to his body.  What has he learned from his experience, and what’s his lifestyle like today?  Find out that and more in our interview.

1) Tell us about your heart attack and how this journey began.

I suffered a heart attack some twelve years ago. While working in the yard one very cold afternoon I had “cold sweats” and a very sore throat. I started feeling better and decided to go to work the following day. Late in the morning of the second day I began feeling much worse and called my wife and told her she needed to pick me up and we should go to the hospital together. I told my wife and the triage nurse in the ER that I was developing pneumonia.

After a short time in the ER a technician came in and conducted an EKG. He immediately told the other personnel in the ER that I was exhibiting “tombstone T’s.” I was rushed to the Cath Lab and had a stent inserted into a vein in my heart. I never suffered any of the “classic” signs of a heart attack (crushing chest pain, pain in my arm(s), losing consciousness, losing the use of any extremity, etc.) Eight weeks after the stent implant I had open heart surgery (aorta valve, four bypasses, repair aortic aneurysms, etc).

2) What’s your lifestyle like today with your implanted LVAD?

Living with the LVAD has changed for the good and for not so good. I am somewhat limited in what I can do and not do, as opposed to my pre-LVAD life. There are activities I absolutely cannot do, and some I choose not to do. I cannot swim, bathe or shower without a special waterproof bag for electronics, fly the airplane we owned, drive fast cars and fast boats, hunt in the mountains, or bass fish in Mexico and South America. I have found that I can cook, watch grandchildren graduate from high school and college, watch great grandchildren come into the world and watch them grow and change.

3) What’s been the most unexpected part of your experience?

The most unexpected part of the heart disease journey was discovering that it did not take a club and a ball, a gun (shotgun or rifle), a rod and reel, flying an airplane, going off to fish and/or hunt, owning a fast car, etc., to be happy. Some of the other things I discovered were: vacations do not have to be long (distance and duration), they just have to be taken with someone you deeply care for, and who deeply cares for you; you discover which of your friends are sincere and true, and endeavoring to be a true and sincere friend in return; and many of the simple pleasures in life have been lost along the way in life’s journey.

Soaking in the Sunset:  One of Alan's Rediscovered Pleasures

4) What do you want others to know about their hearts?

Hopefully, even if it is only one person, what I say here might preclude that person from making the same misguided and poor decisions I made concerning diet, lifestyle, stress and the “things” it requires to be happy.


Recognizing the Rare Disease Community’s Champions of Hope

Posted October 9th, 2012 by

PatientsLikeMe Is Proud to Be Partnered with the Global Genes / RARE Disease Project

Did you know that 1 in 10 people worldwide have rare and genetic conditions?

PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates.

PatientsLikeMe

In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if they focus, they can make a difference.”  (Click here to read about all eight Champion of Hope honorees.)

Even the Dessert Made You Think About Your DNA and the Impact of Genetics at the 1st Annual Tribute to Champions of Hope Gala

After uplifting musical performances and talks by celebrity presenters Jason George (“Grey’s Anatomy”) and Nestor Serrano (Act of Valor), the night ended with a heart-stopping, impromptu rendition of “Somewhere Over the Rainbow” performed by several rising singer-songwriters, including Chris Mann and Katrina Parker from the “The Voice,”  Elliott Yamin from the fifth season of “American Idol” and Gracie Van Brunt, a young girl battling a rare genetic disease called Shwachman-Diamond Syndrome who performed her own original song earlier in the evening.

Chris Mann, Gracie Van Brunt, Katrina Parker and Elliot Yamin (Left to Right) Performing at the Tribute to Champions of Hope

The gala was followed the next day by the 2012 Patient Advocacy Summit, a forum where patient advocates could discuss issues that directly affect them, from resources to policy. PatientsLikeMe Co-Founder and President Ben Heywood was featured on the Innovative Technologies and Platforms panel, sharing the stage with Dr. David Eckstein of the NIH’s National Center for Advancing Translational Sciences. Discussing the topic of “Accessing the Science,” they each gave an overview of how patient registries and clinical trials are promoting change and advancing medical research.

As a prime example, PatientsLikeMe joined forces with the Global Genes / RARE Project last year to create the RARE Open Registry Project, a resource for patients and families fighting rare and genetic diseases.  What makes it different from other registries is every time you enter data into the system, you receive information back showing how your data compares to others fighting similar diseases or taking similar therapies.  If your family is impacted by a rare or genetic disease, we invite you to join the registry today


Creating Your “A Team” for Health

Posted October 3rd, 2012 by

Today’s guest post is written by PatientsLikeMe Vice President for Advocacy, Policy and Patient Safety Sally Okun, RN, MMHS.

SallyOkun

Getting health care can often feel like you’re trying to put together a difficult jigsaw puzzle, only to find that some of the pieces are missing. Even under the best circumstances, navigating the health care system is challenging for patients like you and your caregivers.  Worse, when health care is provided in an uncoordinated and fragmented way, the quality of care and patient safety can be compromised.

These are all reasons the idea of “team-based care” is gaining momentum, and emerging as an important factor in helping patients better manage their conditions. For the past year, I’ve been honored to be part of a working group commissioned by the Institute of Medicine (IOM) to write a discussion paper on this topic.

Our team, made up of health care professionals and leading academics from the University of Washington, American Medical Association, Rush University Medical Center, American Academy of Physician Assistants and American College of Clinical Pharmacy, pulled together all that we learned during our monthly meetings, interviews with teams from around the country and input from national experts on “team based care.”  The result is a co-authored paper, published this week, by the IOM.

Defining "Team"

Among the goals we have at PatientsLikeMe is to amplify your voice – the patient voice – in relevant and system-changing initiatives and bring what we’re learning back to you.  As I share with you now the five hallmarks of the most effective teams, I want you to know that much of what we discussed is how you, the patient, are at the center of these teams.  Your needs, preferences and concerns are central to the team’s work.

So, what do you need to assemble your very own “A Team” for healthcare?

Shared and well-defined goals: Patients like you and, where appropriate, family members or other support persons, must work to establish shared goals that reflect your priorities.  Be sure your goals are understood and supported by all your team members.

Clear roles:  Each member of your healthcare team has specific responsibilities. Clear roles help all members of the team share the load, so the team can accomplish even more together than one can accomplish on their own.

Mutual trust: To reach your shared goals, it’s really important for you and the members of your team to earn each other’s trust.  Without this trust among the team it can be difficult to work well together

Practiced communication: Good communication takes practice and even the best teams continuously work on ways to improve this.  With all of the tools we have to communicate today, be sure your team knows what you prefer  – in person, on the phone, via email or text, etc.

Measured processes and outcomes: As you and your team create your healthcare plan, be sure it includes ways to measure how well you’re doing on meeting your goals. This translates to better care, and potentially, better results.

PatientsLikeMe member sokun

Note: The IOM working group was honored that the Journal of the American Medical Association (JAMA) asked it to contribute a Viewpoint piece on team-based care, highlighting the role of the patient on teams. You can see the Viewpoint piece, published today, here.


World Heart Day: Taking Prevention to Heart

Posted October 1st, 2012 by

Did your heart beat a little faster this weekend?  This past Saturday was World Heart Day, sponsored by the World Heart Federation.

World Heart Day 2012

Founded in 2000, this global event was created to educate the public about heart disease and stroke, the world’s leading cause of death, claiming 17.3 million lives each year.  What’s a major concern is that these numbers are rising.  By 2030, it’s expected that 23 million people will die from cardiovascular disease each year – which is more than the entire population of Australia. The main message of World Heart Day is that at least 80% of premature deaths from heart disease and stroke could be avoided if the main risk factors – tobacco, unhealthy diets and physical inactivity – are addressed.   That means that the way you live is inextricably tied to the health of your heart.

Children Are a Major Focus of World Heart Day

Children are a particular concern for the campaign as kids often have little control over their environment, lifestyle and food choices.  Unless families around the world prioritize a smoke-free home with healthy meals and regular exercise, the children of today are going to be at increased risk of cardiovascular disease later in life.  How can you help today’s kids have a strong hearts and a healthy future?  Check out the Kids on the Move Toolkit and Superheart Cartoon Leaflet for Kids to learn how you can put together a customized program for your family, school or community.

Like many health conditions, heart disease may not cross your mind until a human face is put on the disease, especially a face that looks like you or your loved ones.  That’s why the World Heart Federation is collecting personal stories via short conversations in person or by phone.  If you’ve been affected by heart disease or stroke, learn how you can participate in this global project.  Your story can help both world leaders and fellow community members focus on heart health with greater urgency.  We also encourage you to exchange support and tips with PatientsLikeMe members who have experienced a heart attack, stroke, high blood pressure, valvular heart disease or other cardiovascular conditions.

Speaking of individual stories, check out our interview with Alan, a PatientsLikeMe member who’s living with congestive heart failure (CHF).