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So take a moment and answer a few simple questions about your weight, age, family history and other potential risk factors. You’ll be helping yourself potentially avoid a serious disease, and you’ll be helping others no matter what. Take the test now.
“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally. “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting. And social media is one way of doing that.”
Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.
Did you know that 1.7 million Americans sustain a traumatic brain injury each year? Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function?
March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that traumatic brain injuries are a contributing factor in a third of all injury-related deaths in the US. In addition, 3.1 million individuals are living with life-long disability as a result of a traumatic brain injury. Some common causes of these injuries are falls, car accidents, workplace accidents and assaults, but the effects can vary greatly from person to person. No two brain injuries are alike.
Are you living with a traumatic brain injury? Share your symptom and treatment histories with the 500+ members of PatientsLikeMe’s traumatic brain injury community and discuss your experiences in our Injuries and Traumas Forum. In addition, consider raising awareness in your area by getting involved with the Brain Injury Global Picnic, which takes place September 21, 2013. The goal is to organize 1,000 picnics around the world – thus setting the Guinness World Record for the most people picnicking in a 24-hour period – to promote awareness, education and change.
As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.
I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL. I know I didn’t want to look down and read, it needed to come from the heart and what I could remember. I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking. Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.
There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.
Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not? I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy. I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.
There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented. How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear. Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.
Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years. Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.
Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement
CAMBRIDGE, Mass. — — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials. The tool is available at http://www.patientslikeme.com/clinical_trials.
Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.
In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”
Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into our presentation, and Sally reported that it made the experience quite special for her.
The day-and-a-half-long meeting brought together clinicians, researchers, policy makers, advocates, patients and caregivers—people who all care about creating better value and improving the quality of healthcare in the US. In the opening remarks by IOM Chairman Michael McGinnis, whose arm was in a sling, we were reminded that everyone is a patient at some point, but most don’t always have that mindset.
The meeting covered many topics, including the problems with healthcare that are complicated and hard to change. Coming from the PatientsLikeMe community team, the topic that struck me most was empowering patients to meaningfully participate in the decisions that affect them, such as which treatment to take or which doctor to see. There are many barriers to finding the answers, and we have a long way to go in making the answers more accessible, but I was happy to reflect on how our growing community of 180,000+ patients is already becoming more involved in their care by sharing their symptom and treatment data with each other.
Here were two other key takeaways from the workshop, as well as a look at how PatientsLikeMe is addressing each issue:
1. Patients need more information – and better information.
We heard that patients don’t have enough information, and they don’t know how to use the information they do have. Research articles are convoluted, access is limited, options aren’t presented; and as we heard from rheumatoid arthritis (RA) patient Kelly Young, who writes the blog RA Warrior, textbook definitions may not apply to everyone.
In contrast, our PatientsLikeMe community is sharing what’s normal to them, helping others interpret and digest research and creating a real-world database of what is actually going on with their health conditions. That way, members can learn the different treatment options and disease courses, discover the questions they haven’t yet thought about, and decide what’s right for them.
2. The entire doctor/patient culture could use a tune-up.
There was a massive call for a “culture change” in many areas of healthcare, including the way clinicians and patients interact. Jeff Belkora from the University of Califormia, San Francisco, and his team of pre-medical interns shared how having an advocate can make a big difference in doctors’ appointments. For example, an advocate can help you define your questions, actually ask them in the office and be an active participant in making decisions about your care.
While some argue the culture change needs to come from both patients and clinicians, PatientsLikeMe members are already taking huge leaps in demanding to be heard. Members are sharing that it’s okay to fire your doctor, learn from others the right questions to be asking and arrive at doctors’ appointments with your own data in hand, including PatientsLikeMe’s handy Doctor Visit Sheet.
Overall, it was great to see so many people focused on making healthcare better, and that all of these various groups are looking to other consumer models for best practices. I truly felt that the workshop attendees were dedicated to listening—and finding new ways to listen—to families and patients in the name of better care.
What did PatientsLikeMe member Laura Phillips think of the IOM workshop? Check out her take.
Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe. The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000 people.
Here at PatientsLikeMe, we are taking part by raising our hands and sharing our group photo in solidarity with the campaign as well as all of our members living with rare diseases, which affect 1 in 10 people worldwide. You are encouraged to submit your own photo here.
Can you really understand concepts such as health, mobility or well-being without measuring or comparing them? See why Jamie argues that you can’t – and also why one’s “health span” may be more important than one’s “lifespan.” Click the image below to tune in.
*After clicking the image above, select the “08:45” link to your left to start the presentation.
Valentine’s Day is all about showing your love for your significant other. But what if it were also about showing your love for perfect strangers?
February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life. Does your driver’s license currently indicate that you are a donor? If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today. In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.
Wondering if your registration will really make a difference? Here are a few statistics that help underscore the need for more donors:
18 people will die each day while waiting for a new organ
1 organ donor can save up to eight lives total
In particular, there is a need for more minority donors. While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity. Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).
You’ve all heard this fact before: heart disease (including heart attacks and heart failure) is the leading cause of death among American men and women, claiming around 600,000 lives each year. But what are you doing about it? Are you and your family working on the controllable risk factors that play a role in this largely preventable disease?
For example, how are you doing with these controllable risk factors?
During American Heart Month this February, it’s the perfect time to ride the momentum of your New Year’s resolutions and move towards a more heart-healthy lifestyle. That means making small to large changes in your daily routine that really pay off. From what you eat to how much walking you do, take stock of what you can control…and share your experiences with other PatientsLikeMe members.
Not sure where to start? Use a BMI calculator to find out whether your Body Mass Index (BMI) falls within a healthy range. Also, make sure you go in for an annual checkup this year, which will give you and your doctor a chance to look at your cholesterol, blood pressure and heartbeat. That way, if there’s a red flag anywhere, you can start doing something about it sooner rather than later.
We’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program, but we’re pretty sure this team wins the blue ribbon for most festive.
Please meet PatientsLikeMe member Kennqueen’s very colorful team, who donned their best tutus and striped socks for the Jingle Bell Run/Walk for Arthritis in Richland, Washington, on November 17, 2012. Kennqueen has been living with rheumatoid arthritis (RA) for more than a decade, and her supportive family and friends came out to raise spirits and jingle in her honor while raising money for the Arthritis Foundation.
This particular Jingle Bell Run/Walk in Richland, Washington, part of the Tri-Cities area, raised more than $20,000 for arthritis research, while all Jingle Bell events across the country have raised more than seven million dollars to date! How’s that for some holiday cheer?
Inspired to get into the fundraising spirit in 2013? Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation for your team.
The competition will be conducted in two phases. Phase One is an “open ideation phase” where interested developer teams can submit app concepts. From there, the top five teams will be awarded $5,000 to build upon their initial proposals and create working game apps.
What’s at stake? The developer of the winning game app receives $100,000, while second and third place winners earn $50,000 and $25,000, respectively. Winners will be announced in September 2013, with the first place winner honored at the Health 2.0 7th Annual Fall Conference.
Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS. The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet. That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.”
More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year. In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection. That’s why we can’t become complacent about HIV prevention and treatment.
Living with HIV? Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice. If you know your HIV type (e.g., HIV-1: Group M: Type B), you can now search for those with the same type as you and learn from their experiences, including what medications they’ve taken and how they rate each drug’s effectiveness, costs and side effects. From Atripla to Truvada to Norvir, discover how our patients evaluate commonly prescribed HIV treatments and read their battle-tested tips.
The point is that working together can improve care – and increase prevention. Join the millions of Americans working towards an AIDS-free generation today.
Held at the Fairmont Copley Plaza in Boston the next night, A White Coat Affair was an opportunity for summit attendees to unwind and socialize via cocktails, a dinner program, live music and dancing. In honor of the theme, servers wore white lab coats, name cards were labeled like the periodic table and vases were filled with brightly colored liquid to resemble lab tubes. A special highlight of the dinner program this year was the Young Perspectives on ALS segment, which featured the stories of two young people living with ALS (Corey Reich and Pete Frates) as well as four young people who are the children of ALS patients (Katie Shambo, Sam Ketchum, Jenn Sutherland and Alex Heywood).
As you might have guessed, Alex Heywood is the son of Stephen Heywood and nephew of PatientsLikeMe Co-Founders Jamie Heywood and Ben Heywood. Both ALS TDI and PatientsLikeMe were inspired by Stephen’s seven-year battle with ALS, a rapidly progressive neurodegenerative disease with an average life expectancy of two to five years following diagnosis.
Approximately 350 guests attended A White Coat Affair, helping to raise $450,000 towards ALS TDI’s efforts to discover and develop effective treatments for ALS. After a decade of progress, the institute is entering a time of great promise, with several therapies in clinical trials and their own work on Gilenya (a drug currently approved for treating multiple sclerosis) and other potential therapeutics moving into the clinical realm. Learn more about ALS TDI’s current research projects here.
To see more photos from the 2nd Annual White Coat Affair, visit the event’s Facebook page.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.