Where to share your health data

Recently National Public Radio  filed a story about researchers launching an innovative study to determine if ALS patients benefit from the dietary supplement, lunasin. Instead of a lengthy study, costing millions of dollars, the researchers are part of an active online patient community-PatientsLikeMe.

The study they came up with dispensed with many of the standard features of research that make it so expensive, time-consuming and often so hard to recruit patients:

• There's no comparison group taking a placebo; instead the researchers match each patient with three to five people whose disease was on a similar course.

• The researchers could skip safety testing because the supplement is already on the market.

• Most important, they aren't looking for subtle effects, like slower disease progression. That may be vital for a pharmaceutical company seeking approval for a new drug, but isn't necessarily what patients want.

What the article doesn’t mention is that PatientsLikeMe  has been actively involved in research for years. To learn more, download the complete collection of research posters as of Feb. 2016 

Research shows positive outcomes (e.g. new treatments) when health data is shared, particularly when it’s patient driven. Give Up Your Data to Cure Diseases and The Cure For Cancer is Data: Mountains of Data are two examples of the many articles on this topic.

Without belaboring the point, the ability to pool lots of patient information together helps to identify trends, what works, what doesn’t and even what meds that are already on the market that can be used to treat other conditions. Patient driven sites, as demonstrated in the study above, are seeking to address patient concerns and therefore ask questions they want the answers to.

So how can you help to move a step closer to a cure by sharing your data? 

Consider the following:

• Talk to your medical provider about what they would recommend as the best places for data sharing. Have a similar conversation with the local chapter of the condition specific organization (e.g. American Cancer Society)  that is relevant to you.

• Check out Being an E Patient

• Check out the following sites:

- ACOR Association of Cancer Online Resources 

- PatientsLikeMe 

- MyLymeData 

- Shares for Cures:  Part of the new White House Cancer Moonshot,  the SHARE For Cures’ Mission is to empower you to use your health data to advance medical research and save lives. 

• Sync for Science: Helping patients share EHR (electronic health record) data with researchers, S4S is a collaboration among researchers (Harvard Medical School Department of Biomedical Informatics), electronic health record vendors (Allscripts, athenahealth, Cerner, drchrono, eClinicalWorks, Epic, McKesson), and the United States federal government (Office of the National Coordinator for Health IT, Office of Science and Technology Policy, and National Institutes of Health). 

Take a Break: Dia de los Muertos Milagro Shadow Box

I’ve been fascinated by the “milagros” hearts, particularly the shadow boxes that often appear on altars that at this time of year. Milagros, or miracles, are small metal religious charms found in many areas of Latin American. Recently I came across a pattern for the hearts and have been experimenting.

Go to Mexican Tin Folk Art DIY  and follow the pattern. You can make them out of a variety of types of material, not just tin. Try cardstock, cardboard, soda cans or aluminum flashing as is recommended in the directions. 

Not interested in today’s activity, go to the Take a Break Pinterest Board. and pick out something else.

Housekeeping When Sick/Preparing for Colds and Flu

With the cooler temps comes cold and flu season. I’ve already been dealing with a nasty bronchial problem and haven’t had the energy to do much so my house is a mess. It’s depressing to look around and see dishes undone, empty cartons of something, used tissues, rumbled couch and un swept floors. Since surroundings impact how we feel, I’ve been working on creating some sanity without getting wiped out in the process.

Below are some things that have been working for me.

Clean for five minutes when energy permits. This is a short enough time not to be too tiring but sufficient to make a visible difference. Get rid of the trash, clean the surfaces, put dishes in the dishwasher or soak them in the sink and tidy up so you aren’t tripping over junk that you’ve left around. Skip the hamper and put dirty clothes directly in the washer, turning on when you have a full load. Pick the time when you have the most energy. Right after a shower works for me. Five minutes several times a day can make a big difference. Interestingly, if you time yourself, you’ll find that some chores that you dread-unloading dishwasher, emptying compost-takes less than five minutes.

Multi task when possible: You need to brush your teeth for two minutes so with one hand brushing the other can do some tidying, water plants, toss trash etc. Even toes can be put to use straightening an area rug. If you’re getting up to do something anyway, e.g. going to the bathroom, pick up trash and toss en route.

Disinfecting Wipes: Keeping these near my computer and other surfaces required almost no time in helping to keep the germ level down.

Fresh air: I tend to keep a window cracked to get the air circulating. Even when it’s really cold I’ll do this for 10 minutes as it’s not long enough to make an impact on the heating bill but it does help to clear the air. Don’t use air fresheners or burn candles as this can make your situation worse.

Change Linens and Towels: Even if you don’t have the energy to change the bed linens, just replacing the pillowcase gives a lift, as does a fresh towel each day.

Ask for help: Get clear with family that they need to help out and be specific about what they need to do. Pick the items that are going to make you feel better.

Cook Once for Multiple Meals: One-pot meals that can last for several days are ideal. Soups, stews, casseroles that can be done in a crock-pot (slow cooker) save time, energy and taste pretty good. If you live where there is delivery, use it and eat from the containers so you have less dishes to wash.

Shop on-line: Don’t have the energy to shop but need supplies, do it on-line. Sites like Amazon,  Jet, or even Walmart allow you to shop whenever and purchases are delivered to your door, overnight if you’re willing to pay the extra fee. Check out Where to Get the Best Deals Shopping online for Groceries 

Cold and Flu Season-Be Prepared

• Review Don’t have time for the flu. Take Time to Prevent it.: By doing simple measures- vaccination, covering your cough and washing your hands, you can do a lot to eliminate the flu in the first place.

• Stock up: Take advantage of sales and load up on paper products (e.g. tissues, toilet paper); hand sanitizer; disinfecting wipes (great for cleaning off keyboards, cell phones) soaps; soups, drinks and other easy to prepare food items; disinfectant cleaning products, as well as other items you find useful. Include some fun items to help distract when you feel miserable, such as puzzle books from the Dollar Store.

• Once over the medicine cabinet: In addition to supply levels of pain and fever reducers, decongestants, antihistamines, nasal sprays  and other medicines you might need check dates to make sure nothing has expired. Clean humidifier and personal steam inhalers.

Related posts

• Living with a Chronic Condition: Gadgets to Make Life Easier 

• The KonMari Method for Tidying When Affected by a Chronic Condition 

• Making Life Easier: Food Hacks When Affected by a Chronic Condition 

• Cleaning When Affected by a Chronic Condition 

• Are Your Green Cleaning Products Making You Sicker? What about your skin lotions? 

Take a Break: Halloween 2016 Free Printables

Below are various Halloween projects to print out and enjoy as an activity or incorporate into a party.

• RavensBlight Halloween Treats: This is a wonderful collection of images to print out and assemble including pumpkins ghosts, coffin treat box, pumpkin man, two feet tall skeleton and much more. The RavensBlight website is definitely one to explore.

• Ghost House 

 

• Haunted Dimensions: Paranormal Paper craft Projects 

• Dias de los Muertos: Print outs for straws garlands and food containers 

• Pumpkin to color 

• Pumpkin Mandala 

• Pumpkin Carving Templates  

Not interested in today’s activity, go to the Take a Break Pinterest Board. and pick out something else.

Journal Watch October 2016

CHRONIC PAIN

• Sleep is Key to Curing Chronic Pain: A ink between chronic pain and lack of sleep has been identified by a team of researchers. They also discovered that people with pain who believe they won't be able to sleep are more likely to suffer from insomnia, thus causing worse pain. A pioneering study could lead to specific cognitive therapy to cure insomnia and treat chronic pain. Journal of Clinical Sleep Medicine 

• Ketamine May Be Useful in Migraine, Chronic Pain: Ketamine, typically thought of as a powerful sedative restricted to surgical use, is now generating a lot of interest among pain management specialists as a useful approach to refractory migraine and complex regional pain syndrome (CRPS). Academy of Integrative Pain Management Annual Meeting 

• Tai Chi Can Help Relieve chronic neck Pain: Tai Chi, a low-impact mind-body exercise, can be as effective as neck exercises in relieving persistent neck pain, according to results of randomized controlled trial. The Journal of Pain 

COMPLEMENTARY & ALTERNATIVE MEDICINE

• Certain alternative therapies may help patients with bowel disorders: A new review looks at the evidence behind the effectiveness of complementary or alternative therapies-including probiotics, prebiotics, synbiotics, fiber, and herbal medicinal products-for the treatment of bowel disorders such as irritable bowel syndrome (IBS), functional constipation, and ulcerative colitis. Probiotics, synbiotics, psyllium, and some herbal medicinal products (primarily peppermint oil) seem to be effective in ameliorating IBS symptoms. Synbiotics and fiber seem to be beneficial in patients with functional constipation, and the non-pathogenic strain Nissle 1917 of Escherichia coli may be effective in maintaining remission in patients with ulcerative colitis. British Journal of Pharmacology 

• Yoga May be Viable Option for People with Generalized Anxiety Disorder: Yoga could help reduce symptoms for people with Generalized Anxiety Disorder, according to a study published by Georgia State University researchers in the International Journal of Yoga Therapy. 

• Acupuncture reduces hot flashes for half of women, study finds: Hot flashes – the bane of existence for many women during menopause – can be reduced in frequency by almost half for about 50 percent of women over eight weeks of acupuncture treatment, according to scientists. Menopause 

• Changes in Emotional Processing with Mindfulness Meditation: Mindfulness meditation produces demonstrable changes in emotional processing. “Findings provide experimental evidence demonstrating that brief mindfulness meditation, but not deliberate engagement in state mindfulness, produces demonstrable changes in emotional processing indicative of reduced emotional reactivity," the authors write. "Importantly, these effects are akin to those observed in individuals with naturally high dispositional mindfulness, suggesting that the benefits of mindfulness can be cultivated through practice." Frontiers in Human Neuroscience 

• Cannabis excess linked to bone disease, fractures: People who regularly smoke large amounts of cannabis have reduced bone density and are more prone to fractures, research has found. The study also found that heavy cannabis users have a lower body weight and a reduced body mass index (BMI), which could contribute to thinning of their bones. The American Journal of Medicine 

FDA ACTION

• Approves first drug, Exondys 51, to treat Duchenne Muscular Dystrophy

• Approved Amjevita (adalimumab-atto) as a biosimilar to Humira (adalimumab) for multiple inflammatory diseases (active rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis; moderate to severe Crohn’s disease; ulcerative colitis and plaque psoriasis.

• Approved three new indications for Ilaris (canakinumab). The new indications are for rare and serious auto-inflammatory diseases in adult and pediatric patients.

• Permitted marketing of a device that uses a small balloon to treat persistent Eustachian tube dysfunction (ETD), a condition in which pressure, pain or clogged or muffled sensations occur in the ear.

• Approved 1^st automated insulin delivery device the MiniMed 670G hybrid closed looped system

• Approves BurstDR Stimulation for chronic pain

PREVENTION

• Exercise Not Shown to Reduce Women’s Risk of Developing MS: A large, new study shows no evidence that exercise may reduce a woman's risk of developing multiple sclerosis (MS). Previous small studies had shown conflicting results. Neurology 

• No Evidence Activity Tracker Devices Raise Fitness Levels: There's no evidence that fitness tracking devices raise activity levels enough to improve health, even with financial rewards. The Lancet Diabetes & Endocrinology. 

• Anger Exertion Hikes Heart Attack Risk: If you're angry or upset, you might want to simmer down before heading out for an intense run or gym workout. A new study ties heavy exertion while stressed or mad to a tripled risk of having a heart attack within an hour. 

NUTRITION/SUPPLEMENTS/VITAMINS

• Heavy Drinking Can Harm the Aging Brain: As people age, the harmful effects of heavy drinking can take a toll on key brain functions, such as memory, attention and learning, a new study shows. A lifetime history of alcohol dependence was also linked with worse learning, memory and motor function, the researchers reported. These people also had reductions in their attention or executive function (which includes reasoning and working memory), regardless of their age, the findings showed. Alcoholism: Clinical and Experimental Research 

• Vitamin E May Prevent Pneumonia in Non Smoking Elderly Men: Administration of 50 mg per day of vitamin E decreased the risk of pneumonia in elderly male smokers by 72% after they quit smoking, according to a new article. Clinical Interventions in Aging 

• Omega 3 Fatty Acid Stops Known Trigger of Lupus: Consuming an omega-3 fatty acid called DHA, or docosahexaenoic acid, can stop a known trigger of lupus and potentially other autoimmune disorders, researchers have discovered. Plos One 

• Excess dietary zinc worsens C.diff infection: The consumption of dietary supplements and cold therapies containing high concentrations of zinc is now being called into question, following research that suggests it may worsen Clostridium difficile infection. Nature Medicine 

• Fish Oil May Help Improve Mood in Veterans: Low concentration of fish oil in the blood and lack of physical activity may contribute to the high levels of depressed mood among soldiers returning from combat, according to researchers. Military Medicine 

• More Evidence for Benefit of Reduced Salt Intake on Mortality: Sodium intake has a direct relationship with total mortality, according to a report. Over 24 years, people who consumed less than 2,300 mg of sodium a day had a 25 percent lower mortality risk, compared with those who consumed 2,300 to 3,600 mg/day. Journal of the American College of Cardiology 

• Eating Oats Can Lower Cholesterol: Researchers have known for more than 50 years that eating oats can lower cholesterol levels and thus reduce a person's risk of developing cardiovascular disease. Studies during that time have focused on the impact of oats on levels of LDL (or "lousy") cholesterol, which collects in the walls of blood vessels where it can cause blockages or blood clots. But there is growing evidence that two other markers provide an even more accurate assessment of cardiovascular risk -- non-HDL cholesterol (total cholesterol minus the "H" or "healthy cholesterol") and apolipoprotein B, or apoB, a lipoprotein that carries bad cholesterol through the blood. Science Daily 

• Calcium Supplements May Damage the Heart: Taking calcium in the form of supplements may raise the risk of plaque buildup in arteries and heart damage, although a diet high in calcium-rich foods appears be protective, say researchers at conclusion of their study that analyzed 10 years of medical tests on more than 2,700 people. JAMA 

• High-protein diet curbs metabolic benefits of weight loss: Dieters sometimes consume extra protein to stave off hunger and prevent loss of muscle tissue that often comes with weight loss. But in a study of 34 postmenopausal women with obesity, researchers found that eating too much protein eliminates an important health benefit of weight loss: improvement in insulin sensitivity, which is critical to lowering diabetes risk. Cell Reports 

• Forty Years of Low Fat diets a failed experiment: Recent research suggests that eating a low-fat/high-carbohydrate diet—which Americans were advised to do for about 40 years—is not a good idea. But Harvard T.H. Chan School of Public Health nutrition expert David Ludwig says that the low-fat diet remains “deeply embedded in public consciousness and food policy.” Experts now say that not all fats are bad—in fact, some are healthy and important in a balanced diet. Several recent studies found that high-fat diets actually produce greater weight loss than low-fat diets. And while the 2015 Dietary Guidelines for Americans have now lifted the limit on dietary fat, “you’d never know it, because a full accounting of this failed experiment has not been made,” Ludwig wrote. He called for a rigorous examination of “the low-fat diet debacle” and for more government funding to test new ideas in nutrition. CNN 

• Cocoa compound linked to some cardiovascular biomarker improvements: To the tantalizing delight of chocolate lovers everywhere, a number of recent studies employing various methods have suggested that compounds in cocoa called flavanols could benefit cardiovascular health. Now a systematic review and meta-analysis of 19 randomized controlled trials (RCTs) of cocoa consumption reveals some further pieces of supporting evidence. Journal of Nutrition 

TREATMENT

• Arthritis Drug May Help with Alopecia: Alopecia areata is an autoimmune disease that causes patchy or complete hair loss, including on the head, body, eyebrows and eyelashes. Researchers found that more than 50 percent of 66 patients treated with the drug Xeljanz (tofacitinib citrate) saw hair regrowth in three months. JCI Insight 

• Brain Packmaker Improves Lives of TBI Patients: Deep brain stimulation -- a technique that sends targeted electrical impulses to certain areas of the brain -- may help people who've had a traumatic brain injury gain more independence, a new study suggests. Neurosurgery 

• Oxytocin May Quiet Tinnitus: People suffering from chronic ringing in the ears -- called tinnitus -- may find some relief by spraying the hormone oxytocin in their nose, a small initial study by Brazilian researchers suggests. JAMA Otolaryngology--Head & Neck Surgery. 

• More Cancer Patients Gaining from Immune Based Treatments: The American Association for Cancer Research (AACR) says more Americans are benefiting from immunotherapy -- a relatively new treatment approach that helps the immune system target and destroy cancer cells. 2016 Cancer Progress Report 

• Light for Low Male Libido: Light therapy, commonly used to treat seasonal depression, may restore a measure of libido to men who struggle with a low sex drive, a small study suggests. Italian researchers said they found that men exposed to just two weeks of daily doses of bright light saw their testosterone levels increase more than 50 percent, and their sexual satisfaction levels more than triple. European College of Neuropsychopharmacology annual meeting 

• Vasectomy May Not Raise Prostate Cancer Risk: A large, new study challenges previous research that suggested vasectomies might increase the risk of prostate cancer or dying from it. The American Cancer Society epidemiologists reviewed more than 7,000 prostate cancer deaths, as opposed to the just over 800 prostate cancer deaths that were studied by Harvard scientists in a 2014 study. In the latest finding, researchers found no connection between vasectomies and overall risk of prostate cancer, or of dying from the disease. Journal of Clinical Oncology

 • Could Prescribed NSAID Painkillers Raise Heart Failure Risk?: Use of prescription-strength ibuprofen, naproxen and other commonly used pain relievers may be tied to a higher risk of heart failure, researchers report. Non-steroidal anti-inflammatory drugs (NSAIDs). These medications may raise a person's relative risk of heart failure by nearly 20 percent, according to the analysis of medical records for nearly 10 million patients. That risk increases with the amount of NSAIDs a person is taking. A person's risk of hospitalization for heart failure doubles for some NSAIDs used at very high doses, including diclofenac (Cataflam or Voltaren), etoricoxib (Arcoxia), indomethacin (Indocin), and piroxicam (Feldene). BMJ 

• Long Term Tamoxifen Lowers Contralateral Breast Cancer Risk: Treatment with tamoxifen or aromatase inhibitors does cut breast cancer patients' risk of developing cancer in their other breast, according to findings published online Oct. 6 in JAMA Oncology 

• Common Prostate Cancer Treatment Linked to Later Dementia: Men with prostate cancer who are treated with testosterone-lowering drugs are twice as likely to develop dementia within five years as prostate cancer patients whose testosterone levels are not tampered with, research shows. JAMA Oncology 

• Inhaled Version of Parkinson's Drug May Help Keep Symptoms at Bay An inhaled version of the Parkinson's drug levodopa can help when patients experience symptoms between doses of the pill form of the medication, a new, small study finds. Science Translational Medicine 

OTHER

• Health Insurance Hikes Ease But Workers Pay a Price: Premiums for employer-sponsored health insurance rose modestly in 2016, but more workers must meet higher deductibles before their coverage kicks in, a new nationwide survey shows. On average, the annual premium for employer-sponsored family health coverage rose 3 percent to $18,142 this year. The modest rise continues a slowdown in annual premium increases over the past 15 years, according to the report. The average deductible jumped 12 percent (about $159) to $1,478 this year. Kaiser Family Foundation 

• US Health Care System is One of the Least Efficient Worldwide: The U.S. health care system is one of the least efficient worldwide based on a Bloomberg index that assesses life expectancy, health care spending per capita, and relative spending as a share of gross domestic product, according to a report published by Bloomberg. 

• Docs Much Better than Internet or Apps for Diagnosis: Hundreds of millions of people rely on Internet or app-based symptom checkers to help make sense of symptoms or self-diagnose diseases. The first direct comparison shows human doctors outperform digital ones in diagnostic accuracy. JAMA Internal Medicine