6 posts by Katherine Bragg

Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal

Posted February 7th, 2017 by

Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go  

CAMBRIDGE, Mass., February 7, 2017—As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care law. The poll’s 2,197 respondents are among the estimated 133 million Americans living with chronic conditions.

Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety, said the poll gives voice to those who may be most heavily impacted by changes to the law. “Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

Key findings from the poll show that overall, patients have the same concerns as the general population about health care costs, but see benefits in the law that the healthy may have overlooked:

  • More than half (57%) believe the ACA has been helpful to people living with chronic conditions.
  • Nearly half (46%) feel the ACA needs only minor modifications to improve it.
  • Over the last year, their out-of-pocket expenses for health care have either stayed the same (47%) or increased (43%).
  • Lowering costs is a priority for both patients in the PatientsLikeMe poll and for the general population, which took part in a December 2016 Kaiser Health Tracking Poll. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. Lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.
  • Nearly half (46%) of PatientsLikeMe poll respondents felt that a repeal of the 2010 ACA “should not be done,” while one third (31%) of the Kaiser general population felt it “should not be done.”
  • When asked which one component of the ACA they would eliminate if they were forced to choose, PatientsLikeMe respondents were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.
  • When asked which one component of the ACA they would keep if they were forced to choose, PatientsLikeMe respondents were six times more likely to say they would keep mandatory coverage for pre-existing conditions vs. other components of the ACA.
  • The widest differences in opinion related to questions about a repeal of and government involvement in health care law, and were found between the general population, non-condition specific patients, and those who reported major depressive disorder (MDD) as their primary condition:
  • Of those living with MDD, 59% said that the health care law should not be repealed, vs. 45% of the overall PatientsLikeMe respondents and 31% of the Kaiser general population.
  • 42% of respondents living with MDD said decreasing federal government spending on health care should not be done, vs. 29% of the overall patient population and 18% of the Kaiser general population.
  • As for reducing the federal government’s role in health care, 37% of patients living with MDD said it should not be done, compared to 28% of the overall patient population and 20% of the Kaiser general population.

Okun said that patients living with MDD may have a stronger opinion about healthcare law given the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA), a law passed by Congress in 2008 and codified into rules in 2013 to ensure equal treatment coverage for mental illness and addiction. According to the National Alliance on Mental Illness (NAMI), before the law, “mental health treatment was typically covered at far lower levels in health insurance policies than physical illness.”

Full survey results and graphics are available at http://news.patientslikeme.com.

PatientsLikeMe Poll Methodology
Between January 23-27, 2017, PatientsLikeMe fielded a 19-question poll to a sample of its members in the United States who are living with chronic or progressive degenerative conditions. A total of 2,197 patients completed the poll, which asked both original questions and questions from a December 2016 Kaiser Health Tracking Poll to compare patient and general population responses.

Respondents had a range of chronic or progressive medical conditions and listed their primary condition as multiple sclerosis (13%), fibromyalgia (12%), Parkinson’s disease (6%), major depressive disorder (5%), ALS (5%), type 2 diabetes (3%) and multiple myeloma (3%), among many other conditions. The mean age of respondents was 54.5 years (the range was 18- >89). Of 1,840 respondents who gave information on level of education (83.8% of total), 1.0% had less than a high school diploma, 11.0% had high school diplomas, 38.3% had some college, 27.7% reported a college degree, and 22% reported post-graduate education. About one-third (36%) of patients had health insurance through their employer, one-third (35%) had Medicare; and the rest had a mix of other health care coverage including Medicaid, VA, military, and direct pay insurance, which includes insurance purchased from ACA exchange programs. A very small percentage (2.5%) of respondents said they had no health insurance. Nearly all respondents (95%) are registered voters. Their party affiliation is as follows: 37% say they are Democrats, 19% are Republicans; 15% are Independent; 13% preferred not to say; 11% are unaffiliated and 4% are Libertarian.

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

 


PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

Posted December 8th, 2016 by

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.

Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those whose work is of international significance for people affected by ALS/MND.

In presenting the award, the Alliance’s citation acknowledged the founding of both the patient network PatientsLikeMe and the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company. “When their brother was diagnosed with ALS at the age of 29, James Allen Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. They saw firsthand how isolating ALS/MND can be. They took up these challenges as a family and, with family and friends, founded two organizations: ALS TDI, tasked with finding effective treatments for the condition, and PatientsLikeMe, to tackle social isolation and to collect data on what other drugs, interventions or supplements might make a difference to those with ALS/MND.”

Jamie Heywood thanked the association on behalf of his family and PatientsLikeMe members and staff and said the company is ready to lead the next decade of advancements in research and medicine, with and for patients. “We changed the rules by helping patients digitize and share their experience so they could make more informed decisions about how to live with and treat their condition. Now we’re embarking on the next stage of the journey by piloting biomarker discovery in ALS and other conditions. We hope many more patients will join us as we work together to find new answers.”

More information about how to be part of PatientsLikeMe’s upcoming research in ALS/MND is available at www.patientslikeme.com/advanceals.

About PatientsLikeMe
PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                                Margot Carlson Delogne
PatientsLikeMe
781.492.1039
mcdelogne@patientslikeme.com

 


PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Posted November 29th, 2016 by

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days

November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children.

Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children in the Massachusetts-Rhode Island area.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can learn more about how to improve their outcomes and contribute data for research. Health data includes information about a disease or condition – how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

“Over the past two years of 24 Days of Giving, new and existing members have generously donated their health data for good – whether through their treatment evaluations, symptom reports or other health updates,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology and Operations. “We hope people will join us again this year, because the data they share on PatientsLikeMe during 24 Days of Giving – and every day beyond – gives others the best information to make more informed health decisions, and could change someone’s life for the better.”

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter, Facebook and Instagram social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life for free. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe 
PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About Make-A-Wish® Massachusetts and Rhode Island

Make-A-Wish® Massachusetts and Rhode Island grants wishes for children between the ages of 2½ and 18 years of age with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. For a child with a life-threatening illness, a wish fulfilled provides profound joy and lasting hope to keep fighting and dreaming for the future. In its 29-year history, the organization has granted more than 7,500 wishes for children in Massachusetts and Rhode Island. Visit Make-A-Wish Massachusetts and Rhode Island at www.massri.wish.org for more information, to make a donation, or to learn about volunteer opportunities. Find us on Facebook at Facebook.com/MassRIWish, Twitter at Twitter.com/MakeAWishMassRI and Instagram at Instagram.com/MakeAWishMARI.

Contact
Katherine Bragg
kbragg@patientslikeme.com
617-548-1375


PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Posted November 17th, 2016 by

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs

CAMBRIDGE, MA., November 17, 2016PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.

The new information, which is updated daily and comes from aggregated reports by PatientsLikeMe members, highlights the reasons why patients use specific prescription drugs and how effective they think they are. Also included are lists of the top five medication alternatives patients have tried for the same condition, as well as links to more extensive reports about dosage, duration, adherence and burden for more than 5,000 medications.

PatientsLikeMe is a free network where anyone living with a chronic condition can track and share symptom and treatment experiences, connect with others and contribute data for research. The website has helped more than 400,000 people learn from each other about how to improve outcomes.

Walgreens is the first pharmacy to provide PatientsLikeMe reports about medications on its website. The offering is an expansion of the collaboration between the two companies formed in 2015, when PatientsLikeMe first offered its patient-reported information on medications’ side effects and their severity on Walgreens Health Dashboard, a secure and private personalized health information offering.

“Whether you’re just starting a new medication or you’re researching alternatives, knowing what others have already experienced is invaluable,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology & Operations. “We’re excited that our members are helping more people know their options and what to expect, so that everyone can make more informed choices for their health.”

About PatientsLikeMe

PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


World Mental Health Day 2015: What does dignity mean to YOU?

Posted October 9th, 2015 by

Mental illness affects people in every corner of our global community. Thousands with mental health conditions around the world can face discrimination, stigma, and emotional and physical abuse in mental health facilities. Additionally, many receive poor quality of care due to dilapidated facilities and lack of qualified health professionals.[1]

The theme for this year’s World Mental Health Day, observed annually on October 10th, and sponsored by the World Federation for Mental Health (WFMH), is “Dignity in mental health” and focuses on how dignity can be provided in all aspects of mental health – from patient care to the attitudes of the general public.

The WFMH’s goal when it established World Mental Health Day in 1992 was public education at all levels of society. Today it’s become the largest and most widely promoted education and advocacy program of the WFMH.

How can you take part?  You can read and share their campaign materials. And on social media, they’ve been asking: What does dignity mean to YOU? #WMHDay. You can share your responses on their Facebook and Twitter. And don’t forget to log in to your PatientsLikeMe community to share there as well.

Defining dignity, together.


[1] http://www.who.int/mental_health/world-mental-health-day/2015/en/

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