Research

Health Information: What Sources Do People Trust?

Finding accurate and reliable health information has become more confusing for patients than ever before. By examining where patients are getting their information — for example, from trained healthcare professionals or their peers — and their ability to determine the most reliable sources can help the industry and patients better understand the importance of providing reliable health information and the value of patient-to-patient discussions. We recently surveyed 1,000 U.S. consumers about challenges and perceptions around finding accurate and reliable health information. Here’s what we discovered: Being Your Own Advocate, with the Help of Trusted Sources When asked what type of health information they looked for most often, consumers stated that symptoms (31%) and treatment options (21%) are what they look for most. 43% of respondents say that they use their doctor as a resource to evaluate new treatment options, while only 2% say they rely on peer groups. What does this mean? The state of the healthcare industry overall is influx, which means it can be easy for patients to get lost in the shuffle, as many health systems are understaffed and strapped for resources. Now more than ever, patients need to become their own advocates and ensure that they …

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Marijuana/lung cancer: New reporting on potential risks/benefits of cannabis

Medical marijuana and cannabidiol (CBD) are getting a lot of media coverage — so what’s the latest, as it relates to lung cancer? See two recent high-profile articles that weigh the possible risks and benefits of cannabis for cancer and respiratory disease. And add your perspective. (Psst, checkout past PatientsLikeMe write-ups on medical marijuana and CBD for some background.) Risk factor or treatment? Earlier this year, U.S. News & World Report published an article called “Is Marijuana a Risk Factor or a Treatment Option for Lung Cancer?” reported by online CBD resource CAHI. Some key points? Marijuana smoke has many of the same toxins as cigarette smoke, so it could harm the lungs. But the doctors and researchers behind a 2017 report say they have not found conclusive evidence showing that smoking cannabis causes lung cancer (some doctors note that it’s difficult to study because many who’ve smoked marijuana have also smoked tobacco, and there are fewer people who are heavy or habitual cannabis users). However, if it turns out that smoking cannabis isn’t as bad for your health as people first thought, then it comes as no surprise to find out that you can easily buy it online on sites like firethc. The 2017 report did …

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Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy. CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal? What is CBD? Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.” More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”) …

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Probiotics for MS? The latest research

Wondering if a probiotic could help treat your MS? With 10 forum threads on the topic, you’re not the only one. From conflicting information online to recommendations from friends and new research making headlines, separating fact from fiction can be tricky. Here’s a recap of the latest research on probiotics and MS from our in-house team of health professionals. Let’s start with the basics: What are probiotics? Probiotics are live microorganisms (usually bacteria or yeast) that may be able to help prevent and treat some illnesses and encourage a healthy digestive tract and immune system. They’re often referred to as “gut-friendly” bacteria. Where can you get them? Probiotics are often in supplements or foods (like yogurt, kefir, kimchi, tempeh, etc.) that are prepared by bacterial fermentation. A couple probiotic bacteria that have been shown to have health benefits include: Lactobacillus and Bifidobacterium. Within those groups are many different species and strains. Many probiotic supplements (broad-spectrum or multi-probiotics) combine different species together in the same supplement. Gut flora (microbiota) consists of hundreds of different types of microorganisms. Probiotics may help improve the way your gut flora performs. Probiotics can benefit both men and women equally, so it is definitely worthwhile trying them. Why is gut health important for MS? Your …

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Can ketamine help when antidepressants don’t? A closer look at the off-label drug that’s in the spotlight

You may have seen ketamine making headlines recently as a promising drug therapy for treatment-resistant depression, or “TRD.” (What’s TRD? Health care professionals define it as receiving at least two different antidepressants– for at least six weeks in a row, and at an adequate dosage – but experiencing less than a 50% improvement in depressive symptoms.) So, how does it work and what does the research show so far? Get the facts below — plus find some helpful insight on side effects and more from PatientsLikeMe members who have tried ketamine.   Let’s back up — what is ketamine? Ketamine has been around since the 1960s, and over the years it has been used as an anesthetic, treatment for some types of pain and a sedative in certain instances. It’s also been abused as a “party drug” due to its hallucinogenic high. But in the 2000s, researchers discovered that ketamine could also have rapid antidepressant effects — in as little as 24 hours — for those with TRD when administered in a small, single dose IV infusion. A number of clinical trials have since linked the effects of ketamine with improvement in symptoms of major depressive disorder (MDD), as researchers continue to …

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2 immunotherapy treatments in the news: Imfinzi and Keytruda update

Two immunotherapy treatments — Imfinzi (durvalumab) and Keytruda (pembrolizumab) — have made headlines recently in relation to lung cancer treatment. What’s the latest? Here’s an update. Expanded FDA approval for Imfinzi The U.S. Food and Drug Administration (FDA) first approved Imfinzi as a bladder cancer treatment in 2017. Imfinzi is marketed by AstraZeneca. In February 2018, the FDA approved Imfinzi for some lung cancer cases — specifically for patients with “stage 3 non-small cell lung cancer [NSCLC] who are not able to be treated with surgery to remove their tumor, and whose cancer has not gotten worse after they received chemotherapy along with radiation (chemoradiation),” the American Cancer Society (ACS) explains. A few more details on Imfinzi, according to the ACS: The goal of treatment with this drug is to keep the cancer from getting worse for as long as possible (researchers call this “progression-free survival”). The new approval for Imfinzi was based on a randomized clinical trial of 713 people, which found that those who received the drug had an average progression-free survival of 16.8 months compared to 5.6 months for those in the trial who did not receive it. Imfinzi is a “checkpoint inhibitor” drug that targets and blocks the PD-L1 protein to …

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Are we really more likely to cry when watching movies on planes? New study de-mystifies the urban legend

The Oscars have been awarded and spring travel is in full swing, which got us thinking about the urban legend that you’re more likely to cry watching a movie on a plane than on the ground. Is it just a myth or is there more to it? While celebrities, polls and pop culture have covered the phenomenon — also jokingly known as altitude-adjusted lachrymosity syndrome (AALS) — no true scientific research has studied it. Until now. An idea takes flight: The study set up Paul Wicks, VP of Innovation at PatientsLikeMe, studies emotional lability, or uncontrolled crying and laughing, in people with amyotrophic lateral sclerosis (ALS, or motor neuron disease). But he’s also a frequent flier, and on a trip back from an ALS conference found himself a little weepy while watching Selma on a flight. “Although I was studying this uncontrollable emotional expression in people with a medical condition, I thought maybe lots of healthy people might have uncontrollable, unexplained outburst of crying in certain settings, too.” Enter the first scientific study on AALS. Wicks surveyed 1,084 people living in the United States who had watched a movie on a plane in the last 12 months. Participants answered questions about the films they viewed, …

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What’s the right-to-try bill + possible pros and cons?

The U.S. House of Representatives recently passed legislation that could give terminally ill patients the “right to try” experimental treatments — so what’s the controversy? Catch up on the topic and share your thoughts below. “Right-to-try,” in a nutshell The “right-to-try” bill aims to give terminally ill patients who’ve exhausted all other treatment options quicker and easier access to an “experimental treatment” (this is a medication or treatment product that has passed “phase one” of the clinical trial process but has not yet received full Food and Drug Administration [FDA] approval). See this PatientsLikeMe guide to clinical trials to learn more about trial phases and the FDA drug approval process. The House failed to pass the bill on the first try, on March 13, but voted 267 to 149 to pass it on March 21. All in favor… Backers of the bill have cited these “pros” in their reasoning: 38 states have already passed their own versions of “right-to-try” legislation, so a federal version of the law would grant access to experimental treatments nationwide. Although the FDA has existing “expanded access” (or “compassionate use”) policies that allow the use of investigational treatments in the most dire cases, patients must apply to the FDA for permission to receive …

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Defining “good” health care: 2 new studies reveal patient perspectives

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop… Poll results: Good care is harder to get for some conditions Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.” The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care. The poll also found that patients with these conditions are less likely to: Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease. Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, …

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Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much. So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach. The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!) Next came the EPIC Study — …

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