20 posts tagged “podcast”

The Magic Pill: A new 21-day podcast challenge

Posted August 12th, 2016 by

Exercise — do you think of it as a chore, or love the feeling? Our partners over at WBUR are launching a new podcast to inspire people to move more by changing the way we think about it. “A daily dose of get-up-and-go” is the mantra of the The Magic Pill, a 21-day challenge that kicks off on September 1.

Co-hosted by Eddie Phillips, the director of the Institute of Lifestyle Medicine at Harvard Medical School, the podcast is all about shifting our mindsets when comes to exercise and getting active. It’s not about telling you what you should or shouldn’t do — instead, the goal is to inspire listeners to get excited about moving more and to do what you can.

Each day, you can tune in to hear about the science behind exercising, helpful tips, and stories from both athletes and people who’ve never run a mile. Check out the pilot episode for a preview!

Before the challenge starts, head over to the forum and tell us how you feel about getting active: Do you love it? Dread it? And if you do it, what motivates you and how do you work it into your lifestyle?

 

Share this post on Twitter and help spread the word.


Nola’s new bathroom

Posted September 11th, 2014 by

It’s rare that we’re surprised by the power of connection in the PatientsLikeMe community—we see members connect everyday and transform their lives through the exchange of information. This story extends beyond shared knowledge, though; it displays the powerful bonds of internet friends who offered truly life-changing support from opposite coasts. Below, listen to them tell their amazing story to our community moderators Sarah and Jeanette. Click to learn how Gary helped Nola regain her independence, her ability to clean herself, and most importantly, her dignity.

Nola (6.02x10e23) lives with progressive MS in California. In the past ten years, she’s gone from walking to slightly limping, to using a cane and then a walker. Now, she’s in a wheelchair and cannot use her right arm.

“I had to keep adjusting slowly how I did any little thing. How could I write a check? How could I make something to eat? Or get something to drink? Or just get to the bathroom and back? It’s constant change and you have to accept the change and learn how to adapt and try to still be able to get things done that you want done. You’re going to have do it in some very different ways that might be uncomfortable or absolutely undignified. But you have to do what you have to do.”

As her MS progressed, Nola discovered that the 6-inch lip at the bottom of her shower was an impossible barrier. She could get one leg up over it, but she could no longer pull the other leg in, which prevented her from being able to get into the shower to fully bathe herself.

She hired a contractor to build her a handicap-accessible bathroom, and paid half of the money up front:

“He started the project, but he got ill. He lost his regular job and eventually lost his home. I had paid him ahead of time half of the amount, but then when all of these terrible things happened to him, I went ahead and paid him for the rest of the job, even though he had hardly started. He really needed the money. He’d come every once in a while and do a little work. As he got more ill, it just became impossible for him.

It ended up that I still didn’t have a bathroom and I had lost quite a bit of money. I did not have the money to hire somebody else to do this. I wanted to be able to stay in my home, but it was getting to the point where I couldn’t even take care of personal hygiene.”

Nola went 6 years without a shower, until:

“Members of PatientsLikeMe that are in this one particular group with me, we’ve all become close friends over about maybe the past 5 or 6 years. We’ve always relied on each other for moral support. It was my place to complain a little bit. Everyone knew the story and they’d all been rooting for me and hoping that I could get this bathroom done. It had been over a period of 2 years of waiting and waiting.

Gary, here, who works at a Home Deport, 3,000 miles away, on the other side of the country, got this idea. Home Depot sometimes does these charity projects. He suggested that I find out if they might help me.

Gary (1955chevy) did indeed help Nola from his home in North Carolina. Check out the photos on Pinterest below!

We told Nola we’d share some tips and tricks she learned from her PatientsLikeMe community for others to learn from. With a number of different products and limited resources, it’s hard to know what to invest in. Visit this thread to see some of the suggestions Nola has for you and to add your own.

Share this post on twitter and help spread the word for multiple sclerosis.


Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN

Posted October 17th, 2013 by

We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will be able to give feedback on their work, putting them – the patients – at the center of new medical research.

tamara

Tamara’s background includes more than 20 years of practice as a nephrology nurse caring for patients with chronic kidney disease. Over the past three years, her research has focused on hypertension, one of the factors prompting a rise in kidney disease.

Tamara is developing a tool that will help practitioners see how well a patient is doing at home and identify barriers in managing hypertension. There are over 6,000 PatientsLikeMe members living with hypertension, and their feedback will be responsible for helping improve the quality of Tamara’s research. PatientsLikeMe members can give their feedback right to Tamara. They’ll be helping her create a better tool that can improve treatment for everyone living with hypertension.

We’ll be sending out invites over the next couple of weeks, so if you’re living with hypertension and want to give your feedback on Tamara’s tool, simply create a PatientsLikeMe profile and we’ll take care of the rest. If you’re already a member, sign into your profile and we’ll be sure to send you an invitation.


The Open Research Exchange- A talk with pilot researcher William Polonsky, Ph.D., CDE

Posted September 14th, 2013 by

You’ve probably seen some recent posts about PatientsLikeMe’s new Open Research Exchange. Medical researchers will be using our ORE website to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will have an opportunity to give feedback on their work, putting them – the patients – at the center of new medical research.

We wanted to take a quick second to introduce our blog followers to ORE pilot researcher Dr. William Polonsky and share his recent podcast interview with everyone. One of the first clinical health psychologists in the U.S., William has dedicated his career to helping patients with diabetes, conducting research to examine the disease’s critical psychological factors, and lecturing and training healthcare professionals so they can help patients help themselves. The scale he wants to develop on ORE is what he calls the WHY STOP scale. It’s an attempt to understand if you’re eating a meal, how do you decide you’re done?

round-portrait-wpolonsky-f6b0fbe9ef8b3cfe227e44084fb01bbf

Most important, William wants to know how new diabetes medications seem to affect people’s satiety, or how full they feel when they eat. On ORE, William aims to create the first instrument to understand when and how these medications affect people, and how other patients can make better use of them.

We’ll be sending out invites next week, so if you’re living with type 2 diabetes and want to add your voice to William’s research, just create a PatientsLikeMe profile. Already a member? That’s great! Just be sure to sign into your profile this weekend and we’ll send an invite along.


$70,000 at Stake in the “Reporting Safety Events Challenge”

Posted August 22nd, 2012 by

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically.

Learn More About the "Reporting Safety Events Challenge" for Developers Here

The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here.

“Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.”

PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple sclerosis (MS) were able to submit adverse events related to a medication, medical product or medical device directly to the U.S. Food and Drug Administration’s MedWatch program through PatientsLikeMe.  Our system automatically pulled relevant data from the patient’s profile into a FDA 3500 form, dramatically reducing completion time.

Since then, we’ve also developed an integrated and comprehensive drug safety reporting platform that monitors patient data for potential adverse events when we are collaborating with a sponsoring partner in designated disease areas. These data are then clinically triaged and curated using the Medical Dictionary for Regulatory Activities (MedDRA), an industry standard terminology. Adverse events are submitted to our partners electronically in FDA 3500A format to meet regulatory timelines and reporting criteria.  Of note, PatientsLikeMe is the only online health data platform in social media that has successfully passed multiple drug safety audits conducted by our partners’ pharmacovigilance and drug safety experts.

What’s the difference between patient safety and drug safety?  And what do we see ahead in this critical area of healthcare?  Tune in to a podcast with PatientsLikeMe Chairman and Co-Founder Jamie Heywood on this very topic.


PatientsLikeMeOnCall: How Genetics Bears on Your Condition

Posted September 2nd, 2011 by

PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH

Welcome to the fourth installment of our new PatientsLikeMeOnCall podcast series entitled “It’s Friday – Let’s Journal Club.”

This week’s interview is with PatientsLikeMe’s own Catherine Brownstein, PhD, MPH, who recently won a highly competitive award from the International Congress of Human Genetics (ICHG). One of our in-house Research Scientists, Dr. Brownstein captivated PatientsLikeMe headquarters last Friday with her Journal Club talk about what the ICHG award means as well as how the study of genetics can influence healthcare decisions.

Afterwards, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Brownstein to learn more about how the ICHG award is selected as well as how it spotlights PatientsLikeMe’s potential as a platform for genetic discovery. Listen in below to hear what Dr. Brownstein had to say about how your genetics can affect your condition – from how you metabolize drugs to how your disease will progress.


PatientsLikeMeOnCall: Living with Type 1 Diabetes

Posted August 5th, 2011 by

The Many Members of PatientsLikeMe

Welcome to the third installment of our new weekly podcast series called “It’s Friday – Let’s Journal Club.”

This week’s guest interview is with Sarah Taylor, a type 1 diabetes patient, registered nurse (RN) and friend of the company. Sarah stopped by PatientsLikeMe headquarters last Friday to talk about being diagnosed with type 1 diabetes at age nine and how PatientsLikeMe has become a part of her life today.

After this engaging “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Sarah to learn more about how type 1 diabetes affects her day-to-day decisions – from eating to exercising – and how as a nurse she envisions shared patient data helping medical providers. Listen in below to hear what that might look like and also what advice she has for those who are newly diagnosed with type 1 diabetes.


PatientsLikeMeOnCall: Tapping into a Treasure Trove of Information

Posted July 29th, 2011 by

Dr. Kevin Dykstra, PhD, President and CEO of qPharmetra

Last Friday we kicked off our new weekly podcast series called “It’s Friday – Let’s Journal Club.” Thanks to everyone who tuned in. This week’s guest interview is with Dr. Kevin Dykstra, PhD, who is President and CEO of qPharmetra, a pharmacometric consulting company. Dr. Dykstra stopped by PatientsLikeMe headquarters to talk to our team about the use of modeling and simulation to aid drug development.

After this insightful “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Dykstra to learn more about how his team is working to measure the clinical utility of treatments in a systematic, quantitative way. Listen in to hear what exactly that involves and why Dr. Dykstra feels PatientsLikeMe is a “treasure trove of information” that is “incredibly useful” for both patients and drug developers


BBK and PatientsLikeMe: Combining Strengths to Help Patients Everywhere

Posted July 7th, 2011 by

Recently, PatientsLikeMe Chief Marketing Officer David S. Williams III had the opportunity to participate in a podcast interview with the industry magazine PharmaVOICE. Along with Bonnie Brescia, a Founding Principal of BBK Worldwide, he fielded questions about how the new alliance between our two companies can both enhance and expedite the clinical trial recruitment process. Listen in to hear what each had to say about what this partnership means and what we hope to achieve together.

PharmaVOICE Podcast Featuring PatientsLikeMe's David S. Williams III and BBK's Bonnie Brescia


PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)

Posted April 15th, 2011 by

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood

PatientsLikeMe Co-Founder and President Ben Heywood

PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice.

How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series.

Tune in to Ben’s full interview here:

Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

PatientsLikeMe member afleishman


PatientsLikeMeOnCall™: “A Look Ahead” at Patient Safety (Episode 3)

Posted April 1st, 2011 by

“What are the things that affect a patient’s safety? It’s everything – it’s not just whether the drug is good or bad, it’s the whole process.” –Jamie Heywood

Co-Founder and Chairmain Jamie Heywood

Why does the healthcare industry need to shift from drug safety to patient safety? PatientsLikeMe Co-Founder and Chairman Jamie Heywood explains his view in this week’s edition of our podcast series entitled “A Look Ahead.”

No stranger to this topic, Jamie has written about patient safety on our blog before.  “By using structured data collection tools within the PatientsLikeMe platform, overseen by a drug safety professional, industry partners can improve patient safety,” he wrote.

In this edition of PatientsLikeMeOnCallTM, Jamie discusses the difference between drug safety and patient safety, why it is so important for the healthcare system to adapt more to patient safety and what this shift would mean for the future of healthcare.  He also makes the case for why pharmaceutical manufacturers need to follow up on any drug safety events when a new treatment has been developed.

To hear more, listen to Jamie’s full interview:

PatientsLikeMe member afleishman


PatientsLikeMeOnCall™: “A Look Ahead” at Patient and Industry Interaction (Episode 2)

Posted March 25th, 2011 by

“Social media is the canvas on which patients can really paint the entire picture of the experience they’re having with their disease and how it impacts their lives.” David Williams

David Williams, Chief Marketing Office and Head of Business Development

Why is it so important for patients and industry to work together?  Chief Marketing Officer and Head of Business Development David Williams tells us just that in this week’s installment of “A Look Ahead.”  We sat down to discuss the benefits of aligning patient and industry interests as well as the role that social media can play.

Among other win-win results, David shared that this alignment of interests can produce:

  • Faster development of treatments and services
  • Products that impact a patient’s quality of life, not just clinical outcomes
  • Greater patient influence and input on industry decisions

We also talked about how social media has become a key method of interaction, allowing pharmaceutical and other healthcare companies to better understand the functional impact of a disease on everything from mental productivity to the ability to stay employed.  Patients like you discuss issues like these online every day, and if the industry is paying attention, it can lead to richer data and improved services.

What successes has PatientsLikeMe had in bringing patients and industry together?  And what kind of possibilities do we see ahead?  Tune in to David’s full interview here:

Thanks for stopping by and listening to the second podcast in the “A Look Ahead” series. Next Friday, April 1, 2011, we will be talking with Co-Founder and Chairman Jamie Heywood about the transition from drug safety to patient safety. See you then!

PatientsLikeMe member afleishman


PatientsLikeMeOnCall™: “A Look Ahead” at Research (Episode 1)

Posted March 18th, 2011 by

Since 2006, PatientsLikeMe has made great strides in medical research for patients. Of course, all of the research that we do is made possible because of you, our members, and your willingness to openly share your health information, including your treatments, symptoms and outcomes.

Paul Wicks PhD, PatientsLikeMe Research and Development Director

PatientsLikeMe-led research has been published in at least six different scientific journals, including the Journal of Medical Internet Research and the Journal of Neurology, Neurosurgery, and Psychiatry. (See our Research page for a full list.) And, if you look us up on Google Scholar, you’ll see that PatientsLikeMe has been cited by others in more than 900 published scientific articles. We’re proud to have made such a noteworthy impact on medical research in five short years.

So what’s next? What can we achieve now that our patient members number more than 97,000? Well, that’s what this podcast episode is all about! Our Director of Research and Development Paul Wicks PhD stopped by PatientsLikeMeOnCall™ to discuss the future of PatientsLikeMe research, some of the challenges we face and the powerful influence patients like you can have when you share your health data.

Tune in to hear Paul’s thoughts here:

Thanks for stopping by and listening to the first podcast in this new series. Next Friday, March 25, 2011, we will be talking with our head of marketing and business development, David S. Williams III, about the importance of patients and industry working together. See you then!

PatientsLikeMe member afleishman


Look Ahead with PatientsLikeMeOnCall™

Posted March 14th, 2011 by

PatientsLikeMeOnCall™  is proud to present a new podcast series called “A Look Ahead.”  Through these dynamic podcasts, we will be diving into the major shifts PatientsLikeMe sees ahead for patients, patient care and patient/industry collaboration.

David S. Williams III

At the end of 2010, PatientsLikeMeOnCall released an episode called “The Patient Rules.” In this group podcast, we sat down with Co-Founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III and R&D Director Paul Wicks PhD to discuss how far patients like you have come in sharing health information and driving the healthcare process.

In this new four-part series, we will again be talking to each of them about the future of the healthcare industry. What changes are ahead in 2011? And what role will you play? To get you geared up for this series, here is a quick preview clip from my interview with David Williams about the importance of patients and industry working together.

The series premiere for “A Look Ahead” launches this Friday, March 18, 2011, with an interview with Paul Wicks. Look for the other interviews to run every Friday for the next three weeks.  To tune in, subscribe to the series on our iTunes page or listen to any of our podcasts on our PodBean page.

PatientsLikeMe member afleishman