9 posts from January, 2014

Putting patients first: An interview with partners CoPatient and PatientsLikeMe

Posted January 9th, 2014 by

Katie Vahle

Rebecca Palm

Michael Evers
Executive Vice President of Marketing and Patient Advocacy









What’s this partnership all about?

Michael- Every day on PatientsLikeMe, our members are sharing their real-world experiences. They’re getting real support from people just like them, people who get what it’s like to have their condition and be on that journey. In the forums, they chat about everything from their diagnosis experiences to treatments they might be taking, but also share things to make each other smile, like funny pictures of cats doing crazy things.

The forum is also where members chat about their frustrations. And there are topics that come up time and time again like how expensive, and confusing, it is to deal with insurance, billing and overall medical costs. So when CoPatient approached us about working together, we thought it’s worth exploring a potential partnership. They consider themselves “medical billing advocates” and have put together a team that want to make sure everyone is getting the best, most knowledgeable assistance possible. If there’s a way to take the stress out of this healthcare journey for our patient and caregiver members, we want to be able to highlight it. CoPatient seems to offer services that can do just that. On the other hand, CoPatient wants to be able to tell their members about our PatientsLikeMe community because they see how our members are benefiting from tracking their health and connecting with others…all while contributing to research. It’s nice to be able to team up with other organizations that are as passionate as we are about supporting patients through their healthcare journey.

Can you tell us about CoPatient and why you started it?

Rebecca and Katie- We started CoPatient because we saw financial problems coming between patients and their health care providers. Patients are being buried under a mountain of paperwork and bills that they often don’t understand, while providers are spending even more money sending multiple statements in hopes of getting paid. The end product is often frustration for both parties and it can have real consequences, contributing to nearly 2/3 of personal bankruptcies. We felt very strongly that we needed to engage the patient in understanding the financial aspects of healthcare by providing expert resources to help them untangle the web. We don’t want to provide a quick fix; we want to build a community of educated, involved patients and caregivers that make wise healthcare choices with our help.

What does this mean for PatientsLikeMe members?

Michael- It means that if they have questions about their medical billing, expenses or insurance, they now have another resource to go to. Members are providing support and giving valuable advice to each other on PatientsLikeMe, but sometimes it helps to have another advocate in your corner. CoPatient can conduct free audits for PatientsLikeMe members to see if there’s been an error, which quite simply is very cool since medical billing these days can be riddled with pitfalls. In the spirit of transparency, we want to tell our members that the audit is free, but some of their services are not. Then the member can decide if they’d like to take another step forward with one of CoPatient’s paid services. We also want to let our members know that PatientsLikeMe doesn’t get any compensation if they choose to continue working with CoPatient.

Sounds like you’ve had some great success stories. Can you share a couple with us?

Rebecca and Katie- We provide a simplified, plain English explanation to people about everything they’ve been billed for a healthcare episode and any potential billing problems. Whether we find savings or not, people are often relieved just to have the peace of mind of understanding what they owe and having an expert set of eyes to review the bills. Of course, they’re really happy when we can find savings for them as well.

We recently saved over $30,000 for a cancer patient who is insured but had been erroneously billed. She had received hundreds of pieces of mail over the course of her first treatment and had stopped opening them. We took the whole box off of her hands and in the end she got a refund check. We were really proud to have saved her so much money, but equally happy to have alleviated her stress at a very difficult time in her life.

In another case, we worked with a Medicare member whose Medicare Advantage plan had gone bankrupt and stopped paying claims. Providers were billing her directly when they couldn’t get paid by the Medicare administrator, despite the fact that they aren’t allowed to do so. She wasn’t sure what to do, so we were able to get 100% of her bill written off and provided instructions to the providers on how to submit those claims to the appropriate party.

These were both very complex situations that many consumers might have difficulty addressing, but we were able to successfully resolve on their behalf. There are hundreds of other examples, and we’re very proud of the compassionate, passionate advocacy that we provide.

PatientsLikeMe in real life: reporting back from the PFF Summit

Posted January 6th, 2014 by

Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!) patients and caregivers who turned out from all over the world to meet up and share the latest research on pulmonary fibrosis.

The PFF Summit was hosted by the Pulmonary Fibrosis Foundation (PFF), who we met a few months after announcing the launch of the PatientsLikeMe IPF Community. We were very enthusiastic to help support the PFF’s work by sponsoring and contributing to the research exhibition at the summit. While I spoke with patients, caregivers and clinicians about our open patient registry and the history of PatientsLikeMe, Dave and Rishi learned about the latest advances in PF research and shared our study of the impact of PF on patients’ sleep. If you haven’t heard about it yet, here’s what we learned about PF patients and sleep:

  • A total of 66 IPF patients reported having or possibly having sleeping problems, and 47% of these had sleeping problems between 1 and 5 years.
  • Over half of our IPF members said that their sleeping problems were moderate, severe or very severe, and that their sleeping problems had affected their quality of life in the past 4 weeks.
  • IPF patients that have had sleep problems for a long time tended to report a lower quality of life.

Dave in front of the PatientsLikeMe poster with the findings from our study of PF and sleep.

There were many moments that both inspired and enriched our time at the Summit. Some highlights include:

  • Hearing patients say, “I’ve heard of you!” or “I just joined the community!” Welcome and thank you!
  • Watching patients engage with the science and ask thoughtful, tough questions of the medical experts in their field
  • Chatting with the caregiver of a newly diagnosed patient about how much support she had gained from connecting with other patients and caregivers through their local support group
  • The PFF’s announcement of plans to build a clinical registry and care center network with leading PF researchers and their institutions beginning in 2015

Rishi at the PatientsLikeMe booth.

We had a lot of fun and learned even more, but we came home knowing there is still much to be done back here in Cambridge on behalf of all patients. We continue to be proud contributors to patient-centered research that advances medicine. On a personal note, I am profoundly grateful to all our members, for your continued openness and the courage with which you continue to share your story. It is always a pleasure to meet you in real life. You’re the reason every person on the PatientsLikeMe team comes to work every morning, and why we continue to believe that it’s you – the patient – that will change healthcare for the better.

PatientsLikeMe member ArianneGraham