16 posts tagged “TOA”

PatientsLikeMe names 2018 Team of Advisors

Posted December 14th, 2017 by

 

CAMBRIDGE, Mass., December 14, 2017PatientsLikeMe has named 13 members to its 2018 Team of Advisors, a patients-only group that collaborates with the company on new research and product development, advocates on behalf of patients, and provides real-world perspectives to industry and PatientsLikeMe partners.

“This is now our fourth Team of Advisors, and its members have consistently been some of our most vocal and important partners,” said Executive Vice President of Marketing and Operations Michael Evers. “Their insights on everything from product development to design and research, and their strong role as advocates, will be invaluable as we progress with our more advanced initiatives.”

Evers said those initiatives include DigitalMe, which will merge genetic, biological and experiential data from multiple sources to create a personalized, digital representation of health and disease, and give people actionable information to improve their health and health care. “More than half of the 2018 Team of Advisors are participating in DigitalMe. They will be a great resource as we adopt more advanced biological measures to find new signals about health, disease and aging.”

Nearly 1,000 PatientsLikeMe members submitted applications for this year’s team. The 2018 members include 10 women and three men representing a cross section of medical and professional backgrounds, ages and conditions, including: amyotrophic lateral sclerosis (ALS); bipolar disorder; breast cancer; epilepsy; fibromyalgia; lupus; major depressive disorder (MDD); multiple myeloma; multiple sclerosis (MS); Parkinson’s disease; and rheumatoid arthritis (RA). The members named to the team are: Elizabeth Asdorian; Kip Edwards; Marcia Holman; Melinda Lowery; Bernadette Mroz; LaKeisha Parnell; Rich Pollock; Christine Von Raesfeld; Rosie Stambaugh; Paul Tavano; Alysia Taylor; Susan Tomasic; and Jeanette Alston-Watkins.

Rosie Stambaugh joined PatientsLikeMe in 2010, and is living with MDD and fibromyalgia. “There’s an isolation when you’re chronically ill that can work against you. PatientsLikeMe gives you a lifeline to hold onto. You’re talking to people and sharing data and insights, so that everyone can help each other. As an advisor, I will be able to raise my impact by providing hope and answers to those getting diagnosed, today and in the future.”

The 2018 Team of Advisors recently kicked off its 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year.

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 more than 600,000 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.

 

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Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

Posted July 10th, 2017 by

Insurance series part one

 

Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she says can be like “trying to find a needle in a haystack.” Kimberly tells the story of how eight of her doctors became out-of-network overnight when her insurance changed, and how she navigated the system to replace those providers and get her care team back on track. Here’s her story…

Last fall we knew that there was a strong possibility that there was going to be a change in our employer based insurance, and that turned out to be true. A decision had been made and we received final word ten days prior to the switch. Along with the letter, there was a form that you could fill out if you had a complex case, or needed assistance setting up care. As a patient who happened to have a very complex case, as well as someone who was going to be utilizing resources galore, this form was what I needed. This piece of paper was my golden ticket. It was filled out almost as soon as the envelope was ripped open. I also attached two more pages with everything detailed, so there was nothing left for the imagination. Medications, treatment dates, specialists, and conditions all were listed, so that they had as much information as possible to start the process.

From in-network to out

We were currently with an HMO Provider in the same town, but our new HMO was not part of the same network. After frantically searching to see if ANY of my providers were going to be able to continue caring for me, I sat in shock.

 

“Eight of the members of my care team (doctors and physician assistants), were now going to be considered out of network.”

 

I was feeling a little bit like Cinderella, with a midnight curfew and had to work on setting up a new care team FAST! Luckily, I have an amazing primary care physician (PCP), who was still considered in-network, as well as my local hospital. I knew that I would need referrals to get established with new specialists and my PCP initiated the referral process for multiple specialties. Those took a backseat for the moment, as I had a more immediate need. My monthly infusion for my immunodeficiency was scheduled within a week of our plan change, and I knew that I didn’t even have an immunologist anymore, let alone orders for the infusions! Calling back on a whim one more time to ask for a transitional case manager turned out to be the piece of luck that I needed.

A disconnect in healthcare

The transitional case manager was only responsible for making sure that the first two weeks of my care were set up correctly. Prior to the end of the first two weeks of care, I called and asked to be assigned a complex case manager to move forward with. After speaking to triage, I received a phone call that made me really reflect on the multitude of reasons that led people to enter healthcare. After about five minutes on the phone with a nurse for the case management portion, I was asked two questions

Her: “Can you get to doctor appointments?”

Me: “Yes, I find rides all the time because I can’t drive more than 10 miles.”

Her: “Do you need help meeting goals?”

Me: “If by goals you mean symptom control, yes, but if it’s checking blood pressures and reporting back to my physician, then no.”

Then came the moment when I almost completely came unglued. The nurse, who was doing her job, calmly said, “You don’t meet the criteria for complex case management.”

 

My reply was as polite as I could muster at that point, “I just lost eight doctors, so I don’t have any appointments to get to, how about some help with that?”

 

I was told that it wasn’t part of their job and then the phone line went dead. Sitting back in shock all I could think of, was what if I was sitting at her desk? Perhaps some customer relation training should be part of the continuing education. I got over the incident as quickly as possible and then called back to triage for case management. We discussed what had transpired and then I was assigned a social worker, who has made the entire transition much easier. Neurology was going to be the next hurdle. I was due for a three-month checkup for my autonomic dysfunction and several other procedures.

These were due the beginning of December and I had given ample warning that if we did not stay on the same schedule for procedures, that I would end up in the hospital with a migraine. Let’s just say that my warning became reality. They believe me now.

Rebuilding a care team

We also found out that nobody in-network treats patients with autonomic issues. So, we were given the choice of two facilities to go to. We picked one and literally the beginning of May was when we had our first neuro visit. This was six months later than my previously scheduled one was supposed to occur.

We have been with this insurance provider for eight months now and still aren’t completely settled. Sometimes I have days that it is a full-time job just to return phone calls or update doctors. Plus, I have a case manager with insurance and a social worker within the facility. Remember the form that was mentioned at the beginning? Well, it got lost; good thing I kept a copy. It has been the guide for my care as we have been moving forward.  If I didn’t have case management background, I would be lost. I would have given up and my disease would have complete control. I never have given up easily and I don’t intend to now. Every day is a new one, full of opportunity, but this has been by far one of the largest challenges that I have faced in this entire illness.

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