10 posts from December, 2014

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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“…about 10,000 baby boomers are turning 65 every day…” – An interview with Dr. Sarika Aggarwal

Posted December 29th, 2014 by

Sarika Aggarwal, M.D. is Executive Vice President and Chief Medical Officer at Fallon Health, and it’s her job to make sure all plan members get appropriate, effective and high-quality care. We caught up with Dr. Aggarwal for an interview, and she talks about how she came to spend the last 26 years practicing medicine in Massachusetts, what the new partnership between Fallon Health and PatientsLikeMe means for members, and a bit about her work—especially her focus on helping seniors stay and get care in their own homes whenever possible.

A bit of background: Dr. Aggarwal graduated from Grant Medical College at Bombay University and then completed her residency at UMass Memorial in Worcester, Massachusetts. Before joining Fallon Health in 2012 as Vice President of NaviCare Clinical Programs, Dr. Aggarwal was Medical Director in the Office of Clinical Integration at UMass Memorial Medical Care and an Assistant Professor of Medicine at UMass Medical School.

Dr. Aggarwal, we know a little bit about your background in India. What made you decide to come to the United States?

My husband had been studying in the U.S. for about six years and went back to India to visit his parents. [That’s when we met, and] … I came to the United States three days after we got married. I finished my fourth year medical school clerkships here before starting my residency program.

What drew you to Fallon Health? How have things been going since you took over the role of Chief Medical Officer?

I was Medical Director of Clinical Integration of an academic health system on the provider side during my last job. I realized with the advent of the accountable care organizations (ACOs) that the providers needed to learn to manage risk and develop health plan capabilities, such as utilization management and population health management capabilities—things that the health plans had mastered for many years.

As Medical Director, I was working closely with Fallon on one of its programs for seniors called NaviCare. When I learned of a position to lead the program, it was the opportunity I was waiting for.

The role of Chief Medical Officer has been challenging but exhilarating. It is a work in progress, building new programs to improve member heath, looking for opportunities to reduce waste in the system, and building a culture of continuous process improvement.

How are you bringing your experience with nursing home alternatives for seniors to your new role?

NaviCare was a good training ground for learning about taking care of seniors with multiple chronic diseases. Since about 10,000 baby boomers are turning 65 every day, and a large number of them have more than one chronic disease, we spend a lot of time working on ways to give this population the best care, in the right place, at the right time. A lot of my work in NaviCare involved transition of care models to keep the patients independent at home, and out of the hospitals and nursing homes. We are now using some of these successful care management best practices with our other populations.

What’s your favorite success story during your time at Fallon?

In 2013 we started a pilot with a government provider-payer program. This program involves helping the providers with care coordination for the members we share together, efficient sharing of data and successful embedding of case managers and navigators in the provider sites. We have grown membership in this program, and our care team now participates in the provider team office meetings. We have had a lot of member success stories in this program, which shows what collaboration between the different healthcare entities can achieve.

We’re very excited to be partnering with you and bringing PatientsLikeMe to Fallon members as a free online resource. How do you think your members will benefit from an online community and health-tracking site like PatientsLikeMe?

I think when patients are diagnosed with a new medical condition, whether it is rare or common, they need more than clinical care from their provider. In this complex medical environment, they need support and knowledge from a reliable source. PatientsLikeMe is a great tool that can provide a family of support beyond your own family – a family of support that “gets it.”

Even as a provider, it is hard for me to completely understand all the ramifications of an illness in a patient’s life, since I myself do not live with this illness. PatientsLikeMe is a group of people, a forum where you can meet people to talk to, who understand you and who are just like you. In addition, you can track your progress and learn more about your condition from a reliable source, all in partnership with your providers. It is a win-win situation for all in the healthcare system.


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


PatientsLikeMe and the Schwartz Center join forces to better understand patients’ perceptions of compassionate care

Posted December 9th, 2014 by

                            

Collaborators Commit to Sharing Information and Educating Patients

CAMBRIDGE, Mass.—December 9, 2014—PatientsLikeMe and the Schwartz Center for Compassionate Healthcare today announced that they will work together to better understand patients’ perceptions of compassionate care. The collaboration’s goal is to strengthen the relationship between patients and their healthcare providers, which has been associated with better health outcomes, lower costs and increased satisfaction.

Among their work together, the two organizations will survey PatientsLikeMe members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, which the Center hopes healthcare organizations will use to measure and reward the compassionate care doctors, nurses and other caregivers provide to patients and families. They will also jointly develop and distribute content to educate patients about compassionate care and what patients can do to elicit compassion from their caregivers.

“Our research shows that while patients believe compassionate care is critically important to successful medical treatment and can even make a life-or-death difference, only about half of patients believe the U.S. healthcare system is a compassionate one,” said Julie Rosen, executive director of the Schwartz Center. “As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

The Schwartz Center has been working on a multi-question scale that rates patients’ perceptions of the compassionate care they receive from clinicians and other caregivers. To further this work, the collaborators will elicit feedback from patients on how relevant this scale is to their experiences by utilizing the Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues.

“What the Schwartz Center is doing to better measure compassionate care is so inspiring,” said Michael Evers, executive vice president of marketing and patient advocacy at PatientsLikeMe. “This is the type of work that ORE is uniquely positioned to support, and this topic is definitely one about which people using our site will have great perspective.”

Added Rosen, “Our goal is to make compassionate care a healthcare priority and a public expectation. Ultimately, we would like to be able to correlate the compassionate care patients receive with the health outcomes they experience. This is the first step in getting us there.”

About the Schwartz Center for Compassionate Care
The Schwartz Center for Compassionate Healthcare is a patient-founded nonprofit dedicated to nurturing patient and caregiver relationships to strengthen the human connection at the heart of healthcare. Research shows that when caregivers are compassionate, patients do better and are more satisfied, and caregivers find greater meaning in their work and experience less stress and burnout. The Center believes that a strong patient-caregiver relationship characterized by effective communication and emotional support, mutual trust and respect, and the involvement of patients and families in healthcare decisions is fundamental to high-quality healthcare. Visit us at www.theschwartzcenter.org or follow us on Twitter or Facebook.

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 300,000 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.

Contacts
Amanda Dalia
adalia@theschwartzcenter.org
617-724-6763

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


Seeing [MS]: The invisible symptoms – dizziness

Posted December 8th, 2014 by

Lyn Petruccelli is living with multiple sclerosis, and she fights random waves of vertigo and dizziness that can strike her at any moment. Sometimes, the feelings are so strong, she can’t even get out of bed. As Lyn says, “I can’t see it coming, and that makes it hard to fight.”1

 

You are now seeing dizziness

Photographed by Louis Petruccelli
Inspired by Lyn Petruccelli’s invisible symptoms

Lyn’s husband Louis is an accomplished photographer, and they worked together to visually portray what it’s like to live with the possibility of dizziness every day. Their photograph is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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1 http://www.seeingms.com.au/ms-stories


Finding others with PTSD

Posted December 5th, 2014 by

Sometimes it’s nice not having to explain yourself to people who don’t really understand what it’s like for you, and to surround yourself with people who just get it. As the PatientsLikeMe post traumatic stress disorder community grows, we’ve heard from our members who are veterans about how important it is for them to connect to other vets.

Here’s a conversation with our Product Manager and former Marine, Sean Horgan and community member, David Jurado (Jrock121). They shared about their struggles returning home after war, and how they missed their rooftop cigar time with the boys.

David shared some personal details about his journey living with PTSD: after self medicating with Jack Daniels and oxycontin, David found help and peace of mind, connecting with other Veterans, communing with mother nature, and stepping up as a role model for others. He now teaches people you can “replace bad memories with good memories” by working through your bucket list.

The beginning of his transformation started with this cute pup, Willett. Named after a service buddy who died in combat, Willett helped David get out of the house and re-engage with society. David is now Executive Director of Companions for Heroes, a company that places shelter dogs with vets living with PTSD.

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Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

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PatientsLikeMe and USF Health collaborate to empower cancer patients

Posted December 4th, 2014 by

Partnership Marks the First Between the Patient Network and an Academic Health Center

CAMBRIDGE, Mass.—December 4, 2014—PatientsLikeMe and the USF Health Internal Medicine Department have partnered to improve health outcomes for multiple myeloma patients. People living with multiple myeloma and other cancers will be directed to PatientsLikeMe to access patient-reported symptom and treatment information and connect with others to guide their treatment discussions and decisions.

The partnership is PatientsLikeMe’s first with an academic health center. The companies will exchange and publish information on multiple myeloma on their websites and work collaboratively with PatientsLikeMe members to continuously enhance the health and education of people living with the condition. The organizations also expect to collaborate on specific research initiatives in the future.

USF Health, an integral part of the University of South Florida (USF), is a partnership between USF’s health-related colleges and schools and the USF Physician’s Group. “It is an honor as a cancer physician and scientist to become part of a larger community of patients with multiple myeloma,” said Damian Laber MD, Hematology/Oncology division chief at USF and senior member at Moffitt Cancer Center. “This partnership enables patients and their families worldwide to receive the most relevant and current medical information, and will enable us to learn as much as possible from patients so that we not only support them, but improve outcomes for others.”

The agreement is the newest in a series of oncology-focused partnerships for PatientsLikeMe designed to ensure that the patient voice guides cancer research, said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Every day, thousands of people learn they have cancer. More and more of them are joining our site to not only get information and support, but to contribute their health data for research. We’re excited to help USF Health members improve their day-to-day lives, and to partner with such a distinguished research and educational institution so that we can have an impact on people’s lives longer term.”

USF Health members interested in joining PatientsLikeMe can sign up at www.patientslikeme.com/join/usf.

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 300,000 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 blogTwitter or Facebook.

About USF Health
USF Health’s mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a Top 50 research university in total research expenditures among both public and private institutions nationwide, according to the National Science Foundation. For more information, visit www.health.usf.edu.

Contacts
Kristy Andre, USF Health Department of Internal Medicine
kandre@health.usf.edu
813-300-9006

Margot Carlson Delogne, PatientsLikeMe
mcdelogne@patientslikeme.com
781-492-1039


Join Garth Callaghan for 24 Days of Giving

Posted December 2nd, 2014 by

Today’s the day we start to re-think what it means to give back, and we want you to come along with us. We’re kicking off 24 Days of Giving – a new campaign that’s all about the health data PatientsLikeMe members selflessly donate and how we can say thank you.

Today is also known as Giving Tuesday – a day that celebrates generosity. We’re hoping that after you celebrate by giving a donation of time or money to your favorite non-profit, you’ll consider coming back to PatientsLikeMe to donate your data. For every piece of health data you share on PatientsLikeMe over the next 24 days, we’re going to donate up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Not a PatientsLikeMe member yet? Join the community and start donating your #dataforgood. Already a member? Head to your 3-stars page to make an update and data donation.

Leading the charge- Garth Callaghan (@NapkinNotesDad)

Some of you might know Garth as the Napkin Notes Dad. He’s been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. But he doesn’t dwell on that. Garth takes each day as a gift and has fulfilled a promise he made to write 826 napkin notes. Emma will have one waiting for her in every lunch until the day she graduates.

Garth’s personal legacy is his words, and on PatientsLikeMe, his medical legacy is his data. He’s sharing his experiences in the hopes that others can learn from his journey and help fight their own battles better.

“It certainly doesn’t help me to keep my symptoms or my side-effects secret. I feel that I owe other patients my experience. If I donate my data, if I share with an organization that can put it together and see a pattern … I’m helping all of the patients.”

We’ll keep everyone updated on the 24 Days of Giving drive, so keep an eye on our
PatientsLikeMe Twitter and Facebook. Want to share about the data you’ve donated with others on social? Use the hashtag, #24DaysofGiving.

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