“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J
Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here! For our next interviewee, meet Aunti J. Like many others who contributed to the quilt, Aunti J wasfeatured in her local newspaper. She was proud to be raising awareness of Parkinson’s disease (PD) on behalf of all those represented through their patches on the PatientsLikeMe PD community quilt.
Aunti J inherited her PD and has been living with it for most of her adult life. While she has plenty of first-hand experiences with PD, she has also been a caregiver for someone with the disease – her father. A wealth of knowledge with a big heart, Aunti J makes it a point to share as much as she can about what she has learned. When her father passed away, she came online looking for support and an opportunity to share with others. The PatientsLikeMe PD community is thrilled that she found us!
With more than 200 patients with inherited PD on PatientsLikeMe, Aunti J was able to find patients just like her. In fact, she tells a compelling story about how she also found others who were experiencing compulsive disorder as a side effect of their PD and describes feeling as if a weight had been lifted off of her shoulders.
In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.
To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate. Villains are dishonest. As a company, we strive to be honest and transparent – both are key parts of our Core Values as an organization. To that end, let us dig in on a few of your recent follow-up questions:
Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)?
How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. (Read more)
Is this a “privacy scandal”? To us, it’s not a discussion about whether or not health information should be private. (Don’t get us wrong – that’s an important discussion too, but we’re pretty clear on where we stand on that – see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we’ve said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients’ trust.
Our site wouldn’t exist if we had to “persuade” you, the patient, to share your data. Many of you find value in sharing; value in that level of openness. What you should expect in return is a level of transparency about what we will and won’t do with your information. We hope we do a good job of providing that transparency. What do you think?
“I’ve met a lot of people from all over the world,
we are all one happy family.” – Vigwig
Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.” To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few years back, VigWig underwent surgery for DBS (Deep Brain Stimulation). As word spread throughout the community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!
DID YOU ALSO KNOW…
You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.
Posted by Lori Piscatelli Scanlon | October 14, 2010
Last week was Mental Illness Awareness Week. Did you know there are more than 18,000 patients in the PatientsLikeMe Mood Community? Stay tuned for another blog tomorrow with some interesting tidbits about this community. To warm us up, here is a recent newsletter interview we did with three-star member – marathoner452. Read on to find out what she recently told our very own Amy Morton about what brings her joy, returning to teaching, and what she has learned from the PatientsLikeMe Mood Map.
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(Amy) What brings you joy?
(Marathoner452) My two-year-old niece and four-month-old nephew make me so happy.
During my most recent depression, my niece and her parents (my nephew wasn’t born yet) lived at my house and just waking up in the morning and knowing that as soon as I made it downstairs she’d be chanting my name and wanting to sit on my lap at breakfast and pop the bubbles in my cereal was enough of a reason to live another day.
You don’t remember much from when you’re almost two-years-old. I wanted her to remember me. When she gets old enough to understand, I intend to tell her how she helped save my life.
(Amy) What is your top priority these days?
(Marathoner452) I am working on moving back to live with my girlfriend, who has been diagnosed with depression herself. I lived there for two years prior to moving home a year ago at the crisis point of a severe depressive episode.
This means leaving behind a job that’s brought me to stable over the past three months, working as a job coach with adults with developmental disabilities and finding something equivalent once I move. Friends and family both have expressed concern over living that far away from my strong support network [back home], but I’m willing to take the risk.
(Amy) How does your condition affect your social life?
(Marathoner452) I am by nature a very introverted person, and when my anxiety is heightened by a mood episode, I become even more withdrawn. I’ll even cancel plans to spend time with close friends because even the travel or being around strangers is uncomfortable, and I’ll avoid answering the phone. Kinda ironic that I want to get back to being a teacher!
(Amy) What keeps you coming back to PatientsLikeMe?
(Marathoner452) See above. Online forums such as PatientsLikeMe and web chat are perfect for me – low stress and on my own schedule. Crowds and oftentimes even in-person support groups are too intimidating.
I also find all the charting to be very interesting. Sometimes the Mood Map survey will show me something I didn’t even know, like wow, I didn’t realize I was feeling that anxious. And these days I love when it pops out a really high “function” score. That makes me feel like there is hope for me to lead a stable life.
(Amy) Thank you so much for sharing with us today, Marathoner452!
Today’s guest is BrownCat87, an active member of the PD community who contributed to the quilt. In this podcast, BrownCat87 shares about everything from her experiences with depression to how DBS has helped her manage her condition to how this quilt made her feel like she was a part of something special. Listen in!
Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. We are very excited about this article. Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.
What Nielsen did was clearly a violation of our User Agreement. However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world. As I said to Julia, this is a new frontier. We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first.
“This represents my family, we share everything together.”
- PokieToo, PatientsLikeMe Parkinson’s Community
“The Patient Voice” is here! Are you ready to listen in? Today is the official premiere of our new PatientsLikeMeOnCallTM podcast, “The Patient Voice.” Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s quilt, a handmade and inspiring piece of patchwork pulled together by members all over the world. A valuable member of the PatientsLikeMe community, Pokie is recognized in the greater Parkison’s community as a leader and advocate. She has worked a lot with various nonprofits, including as a consultant for the Parkinson’s Disease Foundation Parkinson’s Quilt Project, and she’s the captain of our members’ Team PatientsLikeMe at the Parkinson’s Disease Unity Walk every year.
As you’ll learn from hearing from other members throughout this series, everyone knows her and loves her. Pokie is truly an inspiration to everyone she meets. Listen in to learn about how the PatientsLikeMe PD quilt was created, how it’s being used to empower other patients, and why she calls PatientsLikeMe her family.
On Thursday October 7, 2010, the PatientsLikeMeOnCall TM podcast is proud to present a new series called “The Patient Voice.” Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting their lives.
For the first run in the series, we’ll be focusing on the PatientsLikeMe Parkinson’s community and hearing from members about a very special handmade quilt. A few years ago, members of this community came together online and decided to create the quilt as a fun activity to get them through the winter season. Each patch of the quilt is designed by a different member of the community and demonstrates, in a very personal way, something about the individual and her/his experience living with Parkinson’s disease. Initially a fun passion project, the quilt has become an expression of the power of community. Little did the quilters know how much their project would end up impacting their lives, the lives of other members, and, even beyond that, the lives of people in the Parkinson’s disease community as a whole. This quilt has traveled all over the world; it’s been featured in countless news publications spotlighting our members and their work with Parkinson’s disease; it was spotlighted by the Dartmouth Hitchcock Medical Center in their Health Living & Learning conference brochure; and it was, in part, the inspiration for the Parkinson’s Quilt Project being pulled together by the National Parkinson’s Foundation.
In this five part series, we will be talking to some of the members who contributed patches to the quilt as well as other people who have been touched by the quilt. To get you geared up for this series, here is a quick clip from our interview with PD community member, BrownCat.
The premiere launches this Thursday (October 7th) at 2pm EST with an interview with PokieToo, and the other interviews will run every Tuesday following. To listen to the series, you can subscribe to our iTunes page or you can find our podcasts on our PodBean page. Get ready to be moved by “The Patient Voice”…
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.