111 results for “Patient Voice”

Improving drug safety through the patient voice

Posted November 22nd, 2013 by

At PatientsLikeMe we’re interested in bringing the voice of our patients to the attention of those who make drug products and to the regulators that approve them. Since 2008 we have conducted a series of projects to collect safety information from some of our member communities. We’ve worked with our pharmaceutical partners to help them better understand the safety experiences of patients while they are using certain drug products.

I’d like to introduce you to a new acronym – P.R.O.S.P.E.R.  It stands for Patient-Reported Outcomes in Safety Event Reporting and it promotes the value of including patient experiences in monitoring the safety of drug products during clinical trials and after drugs are approved.

The PROSPER Consortium is co-led and supported by PatientsLikeMe and Pope Woodhead, a UK healthcare firm, with input from most global pharmaceutical companies, many clinical and academic groups, as well as regulators, researchers and patient advocates.

A report from the Consortium was recently published in the journal Drug Safety that provides guidance for using patient reported outcomes (PROs) for safety monitoring processes. These are just a few of the reports findings…

  • The patient perspective is an essential component of drug safety
  • Patient-centeredness and patient safety are emerging as core elements of any responsive health system
  • The potential clinical utility and value of real-world information obtained from real patients taking real drugs is great1

Although the U.S. Food and Drug Administration (FDA) has accepted safety reports from consumers for 20 years through its MedWatch program, other parts of the world only accept reports on adverse reactions to drugs from health professionals. While patient reporting has recently been encouraged there remain skeptics who doubt its value.

PatientsLikeMe is part of the PROSPER Consortium because we believe the patient voice – your voice – is essential to improving the safety of drugs and medical products. As we look ahead to 2014, we’ll be exploring opportunities to amplify your voice across all areas of health care to improve safety, starting with the FDA and the EU counterpart, the European Medicines Agency.

PatientsLikeMe member MollyCotter


1 http://link.springer.com/article/10.1007/s40264-013-0113-z/fulltext.html


PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice

Posted December 3rd, 2012 by

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


The Patient Voice Heard Loud and Clear at AHCJ ’11

Posted April 19th, 2011 by

Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA.  Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.”  It was a great opportunity for us to help healthcare journalists learn more about how to interact (and coordinate interviews) with patients participating in online communities like ours.

What better way to represent the patient voice than to actually have a patient speak on your behalf?  We invited Pamela McGhee, an active member of PatientsLikeMe who had previously done some media interviews, to sit on the panel and provide some tips to journalists on what’s important to patients interviewees.  Pamela was a welcomed and refreshingly enthusiastic panel participant who shared those tips (i.e., the importance of following up after an interview or doing your homework beforehand) as well as her experiences of living with MS and using PatientsLikeMe to “improve her life.”

Moderated by Carla, the rest of the panel included Dan Childs, the coordinating producer for ABCNews.com, and John Novack, director of communications at Inspire.  Both had a lot to share about their experiences in coordinating and conducting patient interviews.  A video highlight reel is below, courtesy of Joy Robertson at KOLR-TV.

In addition to having Pamela there to share her personal experiences of interacting with the media, we also handed out these one-sheets, which outline how to arrange an interview at PatientsLikeMe, as well as four of our own tips for conducting successful patient interviews.

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Thanks again to Pamela for being such an inspirational and empowered patient, one willing to openly share her stories and experiences for others to learn from!

PatientsLikeMe member lscanlon


The Patient Voice: Exploring New Chapters

Posted January 21st, 2011 by

We’ve got more of the patient voice taking us into the weekend. Today we have an interview with AlwaysLearning, a 3-star member of our Parkinson’s Disease Community. We caught up with AlwaysLearning at the 2010 Parkinson’s Disease Unity Walk last spring. She shared with us how she learned about her diagnosis and some of the changes she has made in her life to help her manage her Parkinson’s. Although she’s “always learning,” this member also always jumps at the opportunity to share. Enjoy the video and have a great weekend!


Listen Up! Here Comes The Patient Voice

Posted January 20th, 2011 by

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.


The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude

Posted November 2nd, 2010 by


I don’t think about what I can’t do,
I think about what I can do.  – Cher441

cher441patch

Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each of its recipients. So where is the quilt now and what is it being used for?

I recently sat down with member Cher441, who currently has the quilt. An advocate for raising awareness about Parkinson’s, Cher441 is involved with many support groups including, The Courageous Steps Group, The Parkinson’s Disease Bootcamp group, The Ohio Parkinson Foundation Northeast Region group, as well as several other local awareness groups near her.  Recently, The Courageous Steps and Parkinson’s Disease Bootcamp groups hosted events where Cher441 brought the quilt for everyone to see.

Being a member of so many groups didn’t come easy to Cher441 in the beginning and she credits the connections she has made through PatientsLikeMe as the kick-start for her involvement in everything else.  Listen in to my conversation with Cher441 about how she has been using the quilt to raise awareness about Parkinson’s Disease.

As this podcast series about the PatientsLikeMe Parkinson’s quilt comes to an end, there’s no doubt that the story goes on.  Thank you to all of my guests who have contributed to this first series, including PokieToo, Browncat, VigWig, Aunti J and Cher441.  You’ve warmed and inspired us all with your pieces of this quilt.

Stay tuned for more of The Patient Voice in the coming weeks.

PatientsLikeMe member afleishman


The Patient Voice | Episode 4: Weaving An Inheritance

Posted October 26th, 2010 by

“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.

auntij-patch1Aunti 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.

Here is Aunti J’s story on PatientsLikeMeOnCallTM.

PatientsLikeMe member afleishman


The Patient Voice | Episode 3: When a Community “Becomes Family”

Posted October 19th, 2010 by

“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 vigwigpatch3community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.

Inspired by his Parkinson’s “family” (as he calls them), VigWig plays a more active role in the PatientsLikeMe PD community, and in raising awareness about PD. His story was published in the The Courier of Montgomery County, and VigWig submitted quilt patches to Parkinson’s Quilt Project (coordinated by the Parkinson’s Disease Foundation and displayed at the World Parkinson’s Congress). An honest-to-goodness story about an online “family” rallying together to support one of their own…here is our interview with VigWig.

PatientsLikeMe member afleishman


The Patient Voice | Episode 2: The Warmth Of A Quilt

Posted October 12th, 2010 by

browncat-patch1“When I saw the quilt, I was like, ‘Oh my gosh! It’s beautiful!’…I felt like I was visiting with all of these other people.” – BrownCat87

Wrap yourself up with the PatientsLikeMe Parkinson’s Disease quilt and Episode 2 of “The Patient Voice” podcast series. In our first episode, we heard from PokieToo, creator of the PatientsLikeMe Parkinson’s Disease quilt, and learned about how it all got started.

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!

PatientsLikeMe member afleishman


Series Premiere of “The Patient Voice” – Meet Pokie Too!

Posted October 7th, 2010 by

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“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.

PatientsLikeMe member afleishman


New Podcast Series: “The Patient Voice” Premieres This Thursday

Posted October 5th, 2010 by

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.

pdquiltFor 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”…

PatientsLikeMe member afleishman


The Patient Voice – Loud and Clear

Posted September 1st, 2009 by

We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.

In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members.  At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.

Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!

If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.

Once again, special thanks to our summer intern, Shane, for his work on the video!


The Patient Voice: Interview with Mountabora (Mood Conditions Community)

Posted June 4th, 2009 by

Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience.  Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization.   Here’s what she had to say:

picture-41 (Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like?
picture-11 (Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria.

There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you would if you weren’t hospitalized. It’s basically a condensed version of what you’d get as an outpatient, in a controlled environment.

I’ve been treated at six different hospitals in four states over the last ten years, and I’ve had both wonderful and horrible experiences. The state hospital I went to was more like a prison than a hospital. Patients were restrained and drugged against their will, the nursing staff obviously didn’t care, and I had to wait days to see a psychiatrist and then threaten to take them to court before they’d discharge me. The private psychiatric hospitals were much better, with specially trained art, exercise, and family therapists, productive classes and groups, and lots of one-on-one time with nurses, therapists, and psychiatrists. Unfortunately, this seems to be a situation where you really do get what you pay for.

picture-41 (Maureen) If you could tell other patients one thing about having a positive inpatient therapy (or hospitalization) experience, what would it be?
picture-11 (Mountabora) Hospitalization is very expensive, so treat it like you would any major purchase. Discuss options with your psychiatrist and have a clear idea of why you’re going in and what you’re expecting to get out of it. Once you’re there, take full advantage of the services the hospital offers. Learn as much as you can from both staff and fellow patients, participate fully in groups and individual therapy, and make the most of the (hopefully) peaceful and structured atmosphere.

I also would recommend that anyone with a serious mental illness take some time to learn about patients’ rights in their state or country. You never know when you’ll be put into a situation where you have to advocate for yourself.

picture-41 (Maureen) In a our new report, The Patient Voice on Inpatient Therapy, we summarize top themes cited by our community members regarding their positive inpatient therapy experiences. Do you have anything to add regarding these themes?
picture-11 (Mountabora) I really wish hospitals would put more emphasis on coordination of care right from the start. Almost every time I’ve been hospitalized, I’ve been thrown in with an unfamiliar psychiatrist who gives me a new diagnosis and a completely different set of medications. It took a lot of painful trial and error for my psychiatrist to come up with this diagnosis and treatment plan, and I’d really rather not have to go through it all over again every time I go in to the hospital.
picture-41 (Maureen) You’ve been a very active member of the PatientsLikeMe community for a while now. What do you find helpful about using the site?
picture-11 (Mountabora) I like being able to keep a centralized record of my mood and treatment history that I can use as a reference or share with treatment providers. Theoretically, this information gets transferred from provider to provider, but in reality, I know that a lot of things have fallen through the cracks over the years and my quality of care depends on me being able to give an accurate account of what’s happened so far. I wish I had started this when I was first diagnosed. Maybe I wouldn’t have been hospitalized so much.
picture-41 (Maureen) Thank you for sharing your story and experiences with our PatientsLikeMe community, and with the mood conditions community at-large!

Introducing “The Patient Voice” – First up? Inpatient Therapy

Posted June 3rd, 2009 by

Today’s patient has a loud and strong voice.  At PatientsLikeMe, we hear you.  You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.”

With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that takes what you, the patient, knows and shares it with you, the patient community at-large.  For obvious reasons, we’re calling it The Patient Voice.picture-4

The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today.  The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community.

The first report is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization).   It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another.  We’re now sharing some of the positive experiences with you.  Take a look at the free report and let us know what you think.  Share it with your friends and loved ones who might find it useful.  And, please, join the conversation on PatientsLikeMe today.  You have a voice, so let’s hear it!

PatientsLikeMe member dwilliams