5 posts tagged “partner”

A Q&A with Alec Mian, CEO of Curelator

Posted December 23rd, 2015 by

Our partners at Curelator Headache enable individuals with migraine to discover their personal triggers, dismiss supposed triggers that are not associated with attacks, and identify factors that reduce the risk of having an attack (“protectors”). Understanding your personal triggers – environmental, physical, or emotional – and how they may be acting in combination to provoke attacks is the first step to taking back control and managing your migraines. Read our Q&A with Curelator CEO, Alec Mian, below.

Q: Alec, you have a background in the biopharmaceutical industry. Can you tell us a little bit about yourself and what drew you to Curelator?

I last worked for a biotech startup called Genmedica Therapeutics in Barcelona, Spain. Genmedica was one of the first companies that targeted the cause of diabetes; one of the major causes is depletion of the insulin-producing beta-cells in the pancreas. In animal testing the Genmedica drugs had some of the best results any of us ever saw. These drugs are now in phase 2 clinical trials in humans. But the truth is – for people with early type 2 diabetes, the disease is actually reversible through dietary changes and exercise – unfortunately only a small percentage of the population actually invoke those changes and avoid pills altogether.

Q: Can you tell us where the concept of Curelator came from?

My goal was to create a Company whose mission is to confer long-term benefits for people with chronic conditions, such as migraine, through a non-pharmaceutical approach.

Curelator was the offspring of two needs. The first need is for a non-pharmaceutical approach that can identify all the factors – habits, environment and diet –  that may influence a migraine attack.

The second need is for a fully individualized technology, one that identifies each individual’s personal factors – not the factors that might be common in a population and irrelevant to the individual. Curelator acknowledges that everybody is different.

Q: Can you explain Visual Migraine Language (VML) and the Individual Trigger and Protector Maps?

Curelator requires each individual to self-report and track their exposure to about 60 factors everyday using a smartphone. We’ve made this an easy 2-3 minute exercise by developing a Visual Migraine Language. It is a fun series of icons representing factors that users can quickly learn and facilitates rapid, game-like data entry.

After 45-90 days of data entry Curelator users generate three highly individualized map:

  • The Protector Map will display all the factors associated with decreased risk of attack.
  • The Trigger Map shows factors associated with increased risk of attack.
  • The No-Association Map lists all the factors that have nothing to do with an individual’s migraines. This is actually quite important since many migraineurs walk around needlessly avoiding a catalogue of things for no good scientific reason.

People usually know a couple of their factors, are surprised by others that they did not suspect and inevitably, they also realize they were avoiding things they had no need to avoid.

Q: How can Curelator help people living with migraines? What does Curelator do with the data submitted by migraine patients? (i.e. research, etc.).

The maps equip our users with the knowledge they need to start changing starting their dietary habits and other behaviors. Early results show that people seem to be reporting a 30-40% decrease in attacks and days with migraines after 3-9 months of use – which is fantastic.

You can view some of our results (generated in collaborative studies with National Headache Foundation and Migraine Trust) in an unusual visualization we call a Population Trigger Map:
https://curelator.com/migraine-trust-population-trigger-map/
https://curelator.com/nhf-population-trigger-map/

Q: Are there any success stories you’d like to share, from either the neurologist or patient perspective?

Many patients thank us for discovering simple things, learning that they can actually eat chocolate or drink red wine again –  before getting their maps they were absolutely convinced that they couldn’t.

We have a very interesting case study with a well-known migraine advocate who is active in our PatientsLikeMe forum and is also a registered nurse, Sharron Murray. She was one of our first testers and Curelator successfully confirmed what she had previously found to influence her attacks – but in three months, not five years. We recently interviewed Sharron and she has also has a very popular migraine site.

Q: What advice would you give to people living with migraine? What do you wish more people knew about migraine?

Anyone with migraine should see a good doctor – preferably a neurologist. We have a free coupon referral program with many neurologists so migraineurs can try out Curelator for free and their data will be part of a large research study we are conducting. They just need to ask their doctor for it.

In terms of educating migraineurs, there is a lot of false information about migraine on the Internet. Please don’t assume that there is such a thing as “common triggers.” This condition affects people quite differently.

Q: We’re very excited to be partnering with you. How do you think those using Curelator will benefit from an online community and health-tracking site like PatientsLikeMe? How can PatientsLikeMe migraine members benefit from Curelator?

PatientsLikeMe is an incredibly valuable place to share the experience of your journey, your trials and errors and to learn from others. But shared information is best if it is scientifically based. Otherwise you’ll lose time and be frustrated chasing red herrings. If you have scientifically generated information about your condition, you have the basis for real progress in terms of managing true triggers and embracing true protectors – and getting back control.

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Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

Don’t forget to share this post on Twitter and help spread the word for #BrainsNeedAnswers.


Compassion for All: Overcoming the Stigma of Mental Illness

Posted July 27th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

Our partners at Schwartz Center Compassionate Care recently published a paper about how people living with mental illness experience prejudice, and how their doctors can give them better care.

“Overcoming the Stigma of Mental Illness to Ensure Compassionate Care for Patients and Families.”

Read the full paper

-Lisa Halpern, director of recovery services at Vinfen

Over the years, we’ve heard from the PatientsLikeMe community that many living with mental illness experience stigma, so we thought you’d like to know what researchers have to say about how people with mental illness don’t always get the care they need:

“One of the ways people suffering from mental illness are discriminated against in healthcare settings is when patients’ symptoms are over-attributed to their mental illness. The result is that their other health problems can go undiagnosed and untreated.”

Our partnership:
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

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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.


Shining a light on lung cancer

Posted November 21st, 2014 by

Back in 1995, a few organizations came together to recognize Lung Cancer Awareness Day – there were a few awareness activities and some scattered fundraisers. Fast forward to now. Almost 20 years later, over 125 different lung cancer events are spread across three continents during the month of November. This is Lung Cancer Awareness Month, and the Lung Cancer Alliance (LCA) wants you and everyone you know to help shine a light on this pulmonary condition.

Here is some information you might not know, and can tell others about lung cancer:

  • In 2014, over 220,000 new people will be diagnosed with lung cancer1
  • Lung cancer is the most common cancer among both men and women
  • Lung cancer is the leading cause of death among every ethnic group, and the second leading cause of death in the U.S.2
  • Almost 80% of those diagnosed are former or non-smokers

We got a jump-start here at PatientsLikeMe. Right on November 1st, some on the team joined in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk. They’re a new partner of ours, and together, we’ll be collaborating to increase the number of lung cancer members on the site so that more patient-reported information can potentially guide research on the condition. Check out what else our partners at LUNGevity are doing to raise awareness.

How can you help shine your own spotlight on lung cancer this November?

If you’re living with lung cancer, shining a spotlight might mean giving that extra support to someone who’s going through a similar journey. Vickie just shared her story on the blog, and there are more than 1,000 lung cancer members on PatientsLikeMe. Every day, they are giving support and finding answers from others who understand what it’s like to live with lung cancer. Join in.

Share this post on Twitter and help spread the word for lung cancer.


1 http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics

2http://www.lungcanceralliance.org/assets/docs/media/LCA%20Funding%20Fact%20Sheet%202011%20Final.pdf