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.