144 results for “Patient Voice”

Update and results – the Patient Voice Analysis study

Posted March 6th, 2015 by

About a year ago, we started working with you and your Parkinson’s disease (PD) community on something totally different: a study to compare the sound of your voice to your self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.

A little bit of background
Dr. Little had done some earlier work and compared the voice signals of people who were living with PD to those of people who were not, but we wanted to take that to the next level. With your PDRS, you shared how Parkinson’s was affecting you, and we were able to match your self-reported scores to the sound of your voice.

By matching a PDRS to voice samples, we might develop the ability to predict PDRS scores (which takes a few minutes to complete) by using the voice test (which only takes a few seconds). We might also be able to detect more subtle changes in people’s Parkinson’s through their voice than we can through the PDRS. This is what Dr. Little is working toward, and all the voice samples you donated will help make it happen.

Community results, starting with the basics
Who took part, from where, and how many PDRS scores could we match to voice recordings?

  • Most of the recordings came from the U.S. (81%), with others coming from the U.K. (12%), Canada (5%) and some from Australia and New Zealand, too.
  • 677 of you recorded 851 voice samples
    • Since our original goal was 500 samples, you blew that out of the water!
  • 114 of you took the test two or more times, and one community member even contributed 10 recordings!
    • For those that took part more than once, we can start to examine how your symptoms changed over time.

Why voice recording quality matters
For the PVA study, you were able to use your landlines, cell phones, even Skype or Voice-Over-Internet-Protocol (VoIP) to submit your voice samples. The recording quality varies depending on which type of call you used, occasionally creating technical issues in analyzing the voice samples.

For example, if you’re using a cell phone in a busy restaurant, your microphone will automatically get louder so that the person you’re talking to can hear your voice better and without distortion. But that also changes the loudness of the background noise. In this study, that automatic change could actually affect the quality of the voice recording, so we have to identify where this has been an issue and find ways to overcome it.

Partly because of this, we’re still analyzing the voice samples in detail. We’re looking for subtle markers of Parkinson’s, such as fluctuations in volume, pitch and breathiness. We’re also training intelligent algorithms to identify when the quality of the voice recording is strong enough so we can develop a consistent and repeatable process.

You be the researcher
To give you some idea of what we are looking for in these voice recordings, we wanted to share a couple with you. The first is someone living with severe Parkinson’s, who scores 55 on the PDRS. You can probably hear the noticeable tremor in pitch, and the occasional short breaks in voicing.

The second is a recording of someone with mild Parkinson’s, who has a very low PDRS score of 1.

Can you hear the subtle drift in pitch? This is, most likely, indistinguishable from normal pitch drift. Subtle pitch variations such as this are one of the kinds of symptoms that algorithms attempt to identify from these voice recordings, and they contribute towards making the PDRS prediction.

So, what’s next?
At this stage, the PVA project is still just a research tool and isn’t quite ready for clinical or diagnostic use. We’re still working on analyzing the data to compare the severity of voice patterns to the reported severity of Parkinson’s disease. But in the meantime, if you’re looking to share more info with your doctor, the most useful tool is your PDRS score on your PatientsLikeMe profile. It contains items that make sense to a neurologist. If your clinic has access to speech and language pathologists, they would also have the ability to map any vocal issues you may be experiencing as part of your Parkinson’s.

As we continue to evolve the tools, we hope to provide individual level feedback and information for clinicians. But before that can happen, we want to make sure that the data quality is high enough to support drawing clinical conclusions.

 


The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

Share this post on Twitter and help spread data for good. And don’t forget to check out previous data for good member videos.


The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread data for good. And don’t forget to check out previous data for good member videos.


The Patient Voice- Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

Share this post on twitter and help spread data for good. And don’t forget to check out previous data for good member videos.


The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced data for good back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

Share this post on twitter and help spread data for good.


The Patient Voice- Fibromyalgia member Becca shares her story

Posted May 28th, 2014 by

 

What does sharing about health experiences and donating data for good mean to her?
“I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca

If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.


The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our data for good initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what data for good means to them.


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.

screen-shot-2011-04-19-at-34532-pm

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