Search Results for: A Look Ahead

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

“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 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: Podcast Powered By Podbean Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

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

“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 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: Podcast Powered By Podbean

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

“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 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 …

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

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. 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: Podcast Powered By Podbean Thanks for stopping by …

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Look Ahead with PatientsLikeMeOnCall™

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. 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. Podcast Powered By Podbean 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 …

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What lies ahead – PatientsLikeMe member John shares his journey with ALS

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and outlook after being diagnosed with ALS. And as we speak, he’s traveling across the United States with his adorable dog, Molly (that’s her in the picture) to help raise awareness and funds for ALS through his artwork. Learn more about his efforts on the ART 4 ALS website and check out his full interview below.  When did you first start experiencing symptoms of ALS? What was your diagnosis experience like? I first experienced ALS symptoms early in 2012 as I was trying to wind down a career in metropolitan planning. At the time, I was also heading up the recovery group I helped establish in our hometown of Schoharie NY after the devastating floods from Hurricane Irene in August 2013. The flood had put 85% of all homes and 100% of all businesses in town out of commission. I’m proud of the response from the …

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One for All: The Road Ahead with PatientsLikeMeInMotion™

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you! Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated. 2009 Quick Facts 2009 marked the debut of the PatientsLikeMeInMotion program. Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States. In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA). The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them). 2010 Quick Facts A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 …

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5 Tips to Help You Prepare For Your Next Doctor’s Appointment

When you aren’t feeling well, it can be easy to feel overwhelmed at a doctor’s appointment. If you’re experiencing new symptoms or if your old symptoms have gotten worse, you may feel anxious, and nervous, and may forget to ask important questions. Doctor’s visits are often pressed for time, which may add to your nervousness. This may make it more difficult to cover all your bases.  Being prepared for an appointment with your doctor and being your own health advocate is critical to getting the most out of your visit. When you gather the information you need beforehand, you can make the visit go more smoothly and ensure you are getting answers to all your questions so you leave feeling better than when you walked in.  Why It’s Important to Be Prepared The COVID-19 pandemic has dramatically changed how we all go about our daily lives and do things, including a visit to the doctor. From March to the end of April 2021, outpatient visits dropped nearly 60%. While visits began to climb, there was a shift from in-person visits to telemedicine. Telemedicine appointments are helpful because it can save you and your doctor time, but also has limitations like the inability to …

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What You Need to Know About the Three Different Types of Dialysis

When you’ve been diagnosed with chronic kidney disease (CKD), you and your health care provider will discuss treatment options to help manage your condition and prevent it from progressing to kidney failure. Treatment will depend on what stage of the disease and if there are any underlying causes, like diabetes or high blood pressure. In the earlier stages of CKD, treatment options may include a modified diet, antihypertensive medications, and vitamins and supplements. As the disease progresses to end-stage renal disease or end-stage renal failure, the kidneys are no longer functioning and will require a more extreme treatment protocol. End-stage renal disease requires either dialysis or a kidney transplant.  What is Chronic Kidney Disease? Chronic kidney disease is a gradual loss of kidney function over time. The kidneys are an important organ in the body that is responsible for filtering waste and excess fluids from the blood, maintaining overall fluid balance, and regulating the amount of salt and minerals in the body. Waste, excess fluid, and minerals are excreted through the urine to prevent buildup. But when kidneys become damaged, they aren’t able to filter blood as well as they should. This means that excess fluid, waste, and minerals can’t be …

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How Is Serotonin Actually Linked to Chronic Disease

Have you ever been doing something you really enjoy, like spending time with a loved one or playing your favorite game and felt overwhelmed with happiness? Or maybe you’ve experienced the opposite, where you felt down for a few days or weeks? Have you had difficulty falling asleep? Or experienced stomach cramping and bloating after a meal?  If you’ve ever experienced one of these things, or all of them, you may think they have nothing in common. But, thanks to a hormone and neurotransmitter called serotonin, they actually have more in common and are more connected than you think.   What is Serotonin?  Serotonin is a neurotransmitter found in the brain and the gut. The body uses it to send messages between neurons, or nerve cells, throughout the body. The messages sent by this neurotransmitter are responsible for regulating mood and sleep, as well as appetite, digestion, and cognitive function.   It is often referred to as the “happy chemical” because it contributes to feelings of well-being and happiness, the scientific name for serotonin is 5-hydroxytryptamine (5-HT). It is mainly stored in a cluster of nuclei in the brain stem called Raphe nuclei. Serotonergic fibers are synthesized from the Raphe nuclei and …

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