10 posts tagged “One Mind”

Treating PTS: What members said in a recent study

Posted June 27th, 2016 by

June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s PTS community took a survey, and now that we’ve analyzed the results, we wanted to share what we’ve discovered.

Check out this infographic to see what members said about why they did or didn’t seek treatment, who helped them find it, and whether or not it helped.

 

 

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Brain Injury Awareness Month: Roxana’s story from our partners at One Mind

Posted March 21st, 2016 by

March is Brain Injury Awareness Month, so we’re sharing the story of Roxana Delgado, whose husband Victor is one of the 2.5 million Americans who survive traumatic brain injuries (TBIs) each year.1

In this video from our partners at One Mind, Roxana opens up about the challenges of caring for Victor after he suffered a TBI while serving in Afghanistan in 2009. Roxana says, “Research is something that is needed to be able to meet the needs of this population, to identify, diagnose and treat brain injuries.”

Here’s what else she has to say:


Having trouble watching the video? Click the button below:

If you’ve been recently diagnosed with a traumatic brain injury, share your experience and connect with more than 5,000 TBI members in the injuries and traumas forum on PatientsLikeMe.

 

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1 http://www.biausa.org/brain-injury-awareness-month.htm


From our partners at One Mind: Zack Lystedt’s football story

Posted December 17th, 2015 by

Accidents happen, anywhere to anyone. Whether it’s from playing soccer or football, snowboarding, riding a bike, competing in synchronized swimming, slipping on ice or falling off of a ladder. In sports, even with the best safety procedures in place, there are still accidents. That’s why our partners at One Mind have started the #TreatBrainsBetter campaign. In this campaign, they share Zackery Lystedt’s story:

In October 2006, 13-year-old middle school football player Zackery Lystedt collapsed from a traumatic brain injury (TBI) when he was allowed back into a game just 15 minutes after suffering a concussion. From the time of his injury, Zack spent the next three months in a coma, nine months before speaking his first word, 13 months before moving a leg or an arm, 20 months living on a feeding tube, and nearly three years before standing with assistance on his own two feet.

Zack and his family worked tirelessly to change the rules around concussion, and in May 2009, Washington State enacted the Zackery Lystedt Law, becoming the first state in the nation to enact a comprehensive youth sports concussion safety law. Today, all 50 states and the District of Columbia have followed suit by enacting strong concussion safety laws called “Return to Play” laws. This is the fastest growing public safety initiative to go into law in all 50 states. Nine years later, Zack continues daily therapies and is regularly asked to speak on the dangers of mismanaged concussions. We applaud Zack and his family for their tireless efforts to protect young athletes from returning to the game too soon.

With support from the Lystedt Family, One Mind is also working to protect athletes by advancing the research and supporting studies around concussions and traumatic brain injuries (TBIs). Although strides have been made in brain research, our understanding of the brain has a long way to go – some say brain research is where heart research was 50 years ago. One Mind is working with brain scientists across the US and around the world to find answers for concussions and other brain injuries and diseases by supporting researchers collaborating to come up with answers sooner.

Learn more about One Mind and the #TreatBrainsBetter campaign.

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Joining the effort to find answers from brain diseases and injuries

Posted November 11th, 2015 by

In honor of Veterans Day, we wanted to share two stories from our partner, One Mind.

First, the story of retired Colonel Gregory Gadson, who was wounded during his military service and was living with post-traumatic stress (PTS). PTS affects more than 7.7 million Americans each year.

The second video shares the story of Roxana Delgado, Ph.D. Roxana’s husband Victor was hit by an IUD during military service. She has lived the emotional toll of being his caregiver.  

If you’re a veteran, you can connect with more than 9,300 others in the PatientsLikeMe Veterans forum. Together, we can join the effort to find answers to brain diseases and injuries.

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You are not alone in brain injury

Posted March 16th, 2015 by

#NotAloneinBrainInjury. That’s the overarching theme of the 2015 Brain Injury Awareness Month, organized by the Brian Injury Association of America (BIAA). 2.5 million Americans survive a traumatic brain injury (TBI) each year, and and it’s time to raise awareness for the 5.3 million people currently living with a brain injury.1

In addition, Wednesday, March 18 is “Brain Injury Awareness Day.” There are many different ways to get involved – you can share one of six promotional posters created by the BIAA, listen to several public service announcements and even get involved with the TBI Portrait Project.

Finally, don’t forget to share your support for TBI awareness on social media through the #NotAloneinBrainInjury hashtag. Just click on the Twitter icon below or spread the word on your Facebook page.

Our co-founder, Jamie Heywood, said it best when discussing PatientsLikeMe’s recent partnership with One Mind, a non-profit organization dedicated to benefiting all affected by brain illness and injury:

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions. Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

If you’ve been recently diagnosed with a TBI, join the more than 1,500 PatientsLikeMe members living with different traumatic brain injuries. The community is ready to answer any and every question you might have.

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1 http://www.biausa.org/brain-injury-awareness-month.htm


Give veterans access to the care they need

Posted March 11th, 2015 by

By Peter Chiarelli, retired U.S. Army general & CEO of our partner One Mind

As originally seen in the Washington Post

Soldiers listen as U.S. Secretary of Defense Ash Carter (not pictured) holds a question-and-answer session with U.S.military personnel at Kandahar Airfield in Kandahar February 22, 2015. (Jonathan Ernst/Reuters)

 

The high-grossing film “American Sniper” was nominated for an Academy Award for best picture, but it deserves higher honors for highlighting one of the greatest causes of casualties in our recent wars: post-traumatic stress (PTS).

The story of Iraq war veteran Chris Kyle, who was killed by a Marine veteran suffering from the effects of PTS and other mental-health problems, makes a powerful case that PTS needs to be a higher national priority. (You’ll note that I don’t include the word “disorder” at the end of PTS; the longer PTSD label actually discourages some service members from seeking treatment.) Since “American Sniper” debuted, Veterans Affairs and Defense Department leaders have been highlighting their programs for helping veterans diagnosed with PTS. But are those programs working?

In too many cases, the answer is no. Our PTS diagnostics remain crude, and no drugs have been approved specifically for treating the condition. Complicating matters, because of genetic and other differences among individuals, patients react differently to varying drugs and dosages. Finding the right mix can be a frustrating saga of trial and error. The wrong drug or dose can, if not caught in time, become a factor in other serious mental-health and behavioral issues, even including suicide.

It only makes sense that once Defense Department doctors identify an effective treatment for a service member, that same treatment should be available when the service member leaves active duty and moves to VA for care. More often than not, however, it is not.

The disconnect occurs because Defense has an all-inclusive drug formulary that allows clinicians to prescribe almost any medication approved by the Food and Drug Administration, while VA has a very limited formulary, primarily to control costs. Medically discharged service members who are given a 90-day supply of PTS prescriptions eventually must report to their VA medical facility for refills, where they are often denied — not for medical reasons but because the medications they rely on are not on VA’s approved list.

This is not a case of one prescriber issuing Bayer aspirin while another uses Saint Joseph. Service members whose symptoms are being controlled by specific anti-depressant, anti-anxiety or anti-psychotic drugs, as well as pain and sleep medications, are forced to give them up and search for a replacement — often a painful and dangerous process — simply because Congress has failed to require Defense and VA to harmonize their drug formularies.

Let me be clear: The problem is not that doctors within the two systems disagree over which drugs should be part of their formularies. Their hands are tied. They must operate within the rules set out by Congress.

Rather than repeating the laborious process of finding another drug that works, many veterans have told me they sought out private providers to fill their prescriptions, usually paying for their medications out of pocket. Imagine how they feel about VA when their first experience with the agency is a doctor telling them they cannot fill a prescription that has relieved their PTS symptoms for months or even years. In some cases, the veteran is not even given enough of the recommended drug to safely discontinue its use.

I have testified about this serious discrepancy, most recently as a member on the Military Compensation and Retirement Modernization Commission, and have discussed it privately with members of Congress. A few have said they will try to address the problem, but most have declined, citing the added cost to VA of a fuller formulary and the time the Government Accountability Office would require to determine the budgetary impact of such a change. Shouldn’t the long-term cost, danger and social impact of denying vital medications to veterans provide a sufficiently compelling reason for Congress to act?

The obvious solution is to include the same medications in both formularies. If this is not possible, Defense Department doctors should exhaust all the options available on VA formulary first before considering any drugs not covered by VA. If neither of these options can be adopted, Defense doctors should at least warn service members that their current prescriptions will be unavailable in the VA system.

This problem needs to be fixed immediately. A directive released by VA in late January seeking to address the problem without correcting the misaligned formularies contains too many loopholes and is totally inadequate. We need a solution, and not a patch. Chris Kyle’s death underlines the urgency of providing effective treatments for PTS. We can start by getting the Defense and Veterans Affairs departments on the same page.

Learn more about One Mind.

Read what the PatientsLikeMe community is saying about Peter Chiarelli’s article.


2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

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PatientsLikeMe (mid-year) news report

Posted August 8th, 2014 by

 

We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights:

In the news

Innovators in Health Data Series: No Data About Us Without Us
(Health Data Consortium)

10 Lessons From Empowered Patients
(US News)

PatientsLikeMe Offers Three Services for Pharma and Researchers
(Applied Clinical Trials)

Speaking the Patient’s Language
(Hospitals & Health Networks)

Straight talk with…Jamie Heywood
(nature.com)

Social Media Site Connects Patients Suffering From Similar Illnesses
(KPBS)

A listening cure: PatientsLikeMe gives patients voice in clinical trial design
(TED Fellows)

For more PatientsLikeMe media coverage, visit our Newsroom.


One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury

Posted June 12th, 2014 by

Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions

SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

Building on the headway One Mind has made in seeking out real solutions for patients, One Mind CEO, General Pete Chiarelli, U.S. Army (Retired), said the collaboration will address longstanding issues for people with all forms of PTS and TBI. “You only have to look at the way we diagnose and treat people to know that we’re decades behind in our understanding of these conditions. We have an amazing ability to save soldiers on the battlefield, but we don’t do a good job addressing their invisible wounds. And we prescribe a mix of off-label drugs because nothing has been developed specifically for their condition. We need to look to the future to improve outcomes and lives, and this innovative partnership will do just that.”

Almost 8 percent of adult Americans will experience PTS (including the disorder known as PTSD) at some point in their lives, according to R.C. Kessler’s findings from The National Comorbidity Survey (NCS) Report. In addition to veterans, victims of sexual assault and others who have experienced a traumatic event may develop PTS. TBI is broadly defined as an alteration in brain function or pathology caused by an external force that can occur at home, at work, during sports activities, or on the battlefield. In 2009, the Center for Disease Control and Prevention reported that there were at least 2.4 million emergency department visits, hospitalizations, or deaths related to TBI across the country, and that the leading causes of TBI are accidents, sport-related injuries or other incidents.

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

One Mind is also supporting multi-center clinical studies called TRACK-TBI and CENTER-TBI, which will follow thousands of TBI patients over three years. Both studies enroll patients within 24 hours of their injury and are focused on improving treatments through developing new diagnostics tools such as imaging protocols and biomarkers. Heywood added that in the future, the patient-reported data from the TBI community on PatientsLikeMe may be combined with the TRACK-TBI and Center-TBI data, as well as other studies, to create a rich and unprecedented set of information about people’s real-world experiences.

One Mind and PatientsLikeMe are actively seeking nonprofit and other partners to grow the online community and learn together about people’s real-world experiences. People living with any form of PTS or TBI can join fellow members of the PatientsLikeMe community today to become early users of the site and provide feedback on future customizations for the community. Go to www.patientslikeme.com for further information.

About One Mind
One Mind is an independent, 501(c)(3) non-profit organization dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures; while eliminating the stigma. One Mind believes in open science principles and creates global public-private partnerships between governmental, corporate, scientific, and philanthropic communities. Visit us at www.1mind4research.org or follow us via Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

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CONTACTS

ONE MIND                                                              
Brooke Whitney
Office: +1 206.946.1768
brooke.whitney@1mind4research.org           

PatientsLikeMe
Margot Carlson Delogne
Mobile: +1 781.492.1039
mcdelogne@patientslikeme.com