Sort by: Show All | HBNS Articles only | Blog Posts only | Resources Only | Features Only
Order by: Newest First | Oldest First
The National Health Service in the UK has rolled out its campaign to inform the public that an individual's online summary care record will soon be readily available to any health care worker. At that point, people will be able to view their summary, schedule hospital appointments and make use of health information and links to help them manage their health and lifestyle by keeping track of information like your weight, blood pressure, cholesterol levels and medications.
A young friend showed me her Explanation of Benefits from Empire Blue Cross Blue Shield. "I don't really understand it," she said. This woman has a master's degree from the London School of Economics but couldn't comprehend what her insurance carrier was telling her...
For every problem there is a solution which is simple, clean and wrong.- Henry Louis Mencken
A collection of patient voices from around the web. This week: Regina Holliday, artist, widow and health IT advocate, Trish Torrey, About.com: Patient Empowerment blogger, and Amy Trenderich, Diabetes Mine blogger.
A collection of patient voices from around the web. This week's roundup includes: pediatrician, blogger and mother of two Wendy Swanson, aka Seattle Mama Doc (http://seattlemamadoc.seattlechildrens.org/); Kelly Young, the RA Warrior (http://rawarrior.com/); and Amy Tendrich of Diabetes Mine (http://www.diabetesmine.com/).
There's an extraordinary new article in The Atlantic, 'Lies, Damned Lies, and Medical Science.' It echoes the excellent article in our Journal of Participatory Medicine (JoPM) one year ago this week, by Richard W. Smith, 25 year editor of the British Medical Journal: In Search Of an Optimal Peer Review System.
A new commentary by Peter Frishauf, Fixing Those Damn Lies, has been posted on epatients.net that follows up on Monday's post about Lies, Damned Lies, and Medical Science, an article in the current issue of The Atlantic Monthly. e-Patient Dave advises us to be sure to read Peter's footnotes.
This week's collection of patient perspectives includes DCPatient's Donna Cryer, Amy Tenderich from Diabetes Mine, Kelly Young the RA Warrior, author Paula Span, and Patient Power's Andrew Schorr.
This week's collection of patient perspectives includes Patient Power's Andrew Schorr, Leighann Calentine of D-Mom Blog, e-Patient Dave, and RA Warrior Kelly Young.
The increasing presence (sometime hidden) of advertisers in health care websites - including the new Sharecare - was discussed this week by healthcare journalists Gary Schwitzer and Pia Christensen, Dr. Elaine Schattner, M.D. and marketer and advertiser Dan Dunlop
As Gale Fisher approached her late 60's, she remained active - playing golf and walking, but pain in her right calf made walking difficult, and it was getting worse. Gale eventually saw her doctor who suggested fusion surgery. Gale sought a second opinion from a vascular surgeon. He proposed a major surgery that would require 10 days in the hospital to open the blood flow. Gale sought out third opinion. The information she received changed her life.
A collection of patient voices from around the web. This week's roundup includes: Dana Jennings of the New York Times, RA Warrior Kelly Young, Leighann Calentine from D-Mom Blog: the Sweet Life with a Diabetic Child, and the Patient Empowerment Blog's Trisha Torrey.
A collection of patient voices from around the web. This week's roundup includes: Red Maxwell, founder of the online diabetes community juvenation.org, D-Mom Leighann Calentine, patient empowerment advocate Trisha Torrey, and WarmSocks from "infinity-itis".
I've been following evidence-based medicine for many years and I've been appalled by the way it is playing out. We have pay-for-performance that does not understand that the reliability we are after is not in reliably (read blindly) applying a guideline to a patient population, but rather reliably considering how the evidence applies to the individual in a health care interaction. We have guidelines that are based on expert opinion, often influenced by drug company funding, or based on bad science. And we have a news media that seems unable to present medical findings in a balanced and understandable way.
Increasingly, you are finding real patients who have the conditions discussed at conventions, in scientific sessions, and around exhibit halls. Patients like me want to be where that news breaks; we want to ask questions and thanks to the Internet we have a direct line to thousands of other patients waiting to know what new developments mean for them. PR types and social networking media analysts take note: we are a new force to contend with.
A collection of patient voices from around the web. This week's roundup includes: Dr. Julian Seifter on living with diabetes, RA Warrior Kelly Young, Jim Stanicki on Trisha Torrey's Patient Empowerment Blog, Cynthia Lott Vogel on e-Patients.net, and one patient's expensive visit to the ER.
Insomnia and oversleeping, slowed speech, hopelessness, frequent crying and lack of focus all are symptoms of depression. Overeating or lack of appetite; suicidal thoughts; loss of interest or pleasure in activities and relationships that usually bring joy; anxiety and difficulty feeling pleasure or sustaining positive emotions can occur as well.
This week's roundup features a collection of patient voices from around the web including: DiabetesMine's Amy Tenderich, D-Mom Leighann Calentine, and a perspective on shared decision making.
I am so tired of this all-or-nothing discussion about science! On the one hand there is a chorus singing praises to science and calling people who are skeptical of certain ideas unscientific idiots. On the other, with equal penchant for eminence-based thinking, are the masses convinced of conspiracies and nefarious motives of science and its perpetrators. And neither will stop and listen to the other side's objections, and neither will stop the name-calling. So, is it any wonder we are not getting any closer to the common ground?
At 98 years old, Bob Stewart swears by his dietary supplements as a secret to successful aging. He takes flaxseed and apple cider vinegar pills, along with a Japanese supplement called nattokinase. He has never had a 'bad experience' or side effects, he says. But Betsy McMillan, an Ohio writer, describes her overdose from a vitamin B complex supplement. After a few weeks of taking it'in which she never exceeded the dose recommended on the bottle'her liver began to swell and she was overwhelmed by fatigue. It turned out that the pills contained potentially fatal levels of niacin.
Site Jabber, a website funded by the National Science Foundation to help internet users separate the scams and frauds from real content, called and asked me for advice on how to find good medical content on the web. The interview reads like a huge promotion for my blog, something I was not expecting and for which I thank them profusely.
Media coverage of the challenges we face in making good treatment decisions often focuses on and sensationalizes medical errors, catastrophes and risks. So it was great to see this impressive TV news clip circulated by Gary Schwitzer of HealthNewsReview.org in his blog last week.
News of the World wasn't read by 15 percent of the British public because it told people what they should know. It got there by giving them what they wanted: stories about the peccadilloes of the rich and famous, accounts of the gross incompetence of government and of course, pictures of naked ladies.
Practitioners of evidence-based medicine use published evidence from the medical literature to guide them as they try to provide the best care for each patient. But sometimes the medical literature just feels like a big morass.
"There is a better way - structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace." Rep. Paul Ryan (R-WI) August 3, 2011
. The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.
One of the small joys of having launched my site [http://myheartsisters.org/] is discovering by happy accident the wisdom of other writers ' even when they're writing on unrelated topics not remotely connected to my favourite subject which is, of course, women and heart disease. For example, I happened upon a link to Sandra Pawula's lovely blog called Always Well Within
. Sandra teaches mindfulness meditation, and she lives in Hawai'i (note her correct spelling).
A drug currently used for benign prostate problems is now being pushed for prostate cancer prevention. But the FDA warns there's evidence it may actually result in more advanced cancers.
It is not just when we are seriously ill that numbers dominate our experience with health care. Advances in technology have made it possible to quantify and thus monitor a seemingly infinite number of physiological and psychological health-related states.
Recent posts at Health News Review highlight how the over-simplification of medical journalism leads to misinformed, over-treated patients.
October is breast cancer awareness month. But October 13th is National Metastatic Breast Cancer Awareness Day. Women with metastatic breast cancer (MBC) argue that "awareness" should not be the only message ' or even the main message'of the month. Here are 13 facts they think you should know...
Our country is politically polarized. The economy is teetering. Distrust of government and its employees is at an all-time high. Scientists are criticized as biased money-grubbers.
One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence "that comes from research guided by patients, caregivers and the broader health care community."
When it came time for Jennifer Stevens, an Omaha, Nebraska resident and mother of two, to find an obstetrician for her first baby, she was faced with a dilemma.
Several recent studies reveal that the causes of depression in children are many, and its outward manifestation in teens often goes beyond recognizable symptoms of sadness and lethargy.
The task of changing our routine behaviors and habits ' even those that may be important for our health ' can seem overwhelming. No wonder: habits become habits because they give us something we think we need. Maybe they make us feel better or they bring comfort, familiarity or convenience to our lives. We also worry that we won't be successful. It turns out, the key to lasting behavior change is taking small steps.
For the past two years of chemotherapy and difficult treatment, I have struggled to suppress what feels like a petty sentiment about all the pink attention. If I just own up to it, I feel left out and I really want a parade with everyone wearing teal in support of ovarian research and care. My cancer!
I spent one day last week at MD Anderson Cancer Center in Houston...The waiting room is sizeable but quickly becomes jammed with people...Some look the picture of health. Others wear masks and are pushing IV poles'We're all there because we have a serious diagnosis and we want to see doctors who are among the best. The faces show a mixture of fear, courage and confidence.
From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That's one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here...
As I like to remind my women's heart health presentation audiences, I am not a physician. I'm not a nurse. I am merely a dull-witted heart attack survivor. I also warn them that a lot of what I'm about to say to them is already available out there, likely printed on some wrinkled-up Heart and Stroke Foundation brochure stuffed into the magazine rack at their doctor's office.
Another hospital report card showed up last week adding to the pile of ratings already available. A few years ago there were more than one hundred offered by various for-profit and not-for-profit businesses and government agencies. The newest one is the Hospital Safety Score report card from the Leapfrog Group...
A few weeks ago, in front of a few friends and lots of total strangers, I shared experiences about RA and explained specific ways that direct patient input could improve every aspect of health care, from research to diagnosis to treatment delivery.
Kristen Gerencher of The Wall Street Journal’s MarketWatch, recently interviewed me about internet users and online health information.
The essays collected here reflect on what it felt like as a patient with a serious illness, to cobble together a plan with my clinicians that works and to slog through the treatments in the hope that my cancer will be contained or cured and that I will be able to resume the interesting life I love.
The dynamic nature of health news makes it challenging for clinicians and patients to stay abreast of new developments, interpret data and follow shifting guidelines.
Judy Norsigian is one of the founders of Our Bodies Ourselves (OBOS), a nonprofit public interest organization practicing women's health education, advocacy and consulting, and has served as its executive director since 2001. This is the second in a series of interviews with patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research.
I'??ve been thinking a lot about television anchors and personalities. As they get older they encounter health issues, like the rest of us, and they get publicized because we think we know them so well. Is this helpful for our own health or does it sometimes go too far?
Comparative effectiveness research will be transformational if done properly. The critical thing is that it be done without built-in bias.
I got involved in patient safety many years ago after I lost my mom in early 1995 due to medical errors. While my mom was in a coma for seven weeks, I met other families in ICU. Many of them – the majority – had unanswered questions.
Who would have thought that Twitter, this tiny aperture – a mere 140 characters – could connect me with so many smart, feisty, tough people who share, amplify, and improve on my efforts to spread carefully chosen health and health care content through their responses, retweets, modified tweets and acknowledgements?
Here’s why I tweet what I tweet...
This week in health news: Trauma care disparities persist for blacks | Calorie info on menus starts to have an effect | Soda in schools may lead black students to drink more | “Eat Fresh”? Not necessarily
Recently, Inspire passed a milestone: five million posts written by the patients and caregivers in their online health community. Brian Loew, founder and CEO of Inspire, reflects on what Inspire’s learned from patients and caregivers.
Have you ever felt that claims about the effects of our access to new and more health information overshoot the mark?...Given the sheer volume of information online, you should be able to find robust information about each of these issues that could transform the way you care for yourself.
This week in health news: Using shame to promote weight loss doesn’t work | Black nursing homes face challenges | Hispanic and Black children not getting the right asthma meds | Electronic health records not widespread
For many of us, receiving a cancer diagnosis often includes hearing some statistics about the average or mean survival of people with this stage of this type of cancer. The end of active treatment may arrive accompanied by additional statistics. It is difficult, even for those schooled in the meaning of such numbers, to figure out what they mean for an individual.
I was naive when I decided to enter medicine. My impressions then were that doctors always “did” stuff—for patients, and to patients. We would do stuff to you (examinations, blood tests, scans, surgeries) in order to help you.
You may have seen the story the other day about a paper pointing to an association – not proof of cause – between heavy coffee consumption and higher death rates in people younger than 55. At last check, there were more than 170 stories about this study that turned up on a simple web search. But there was a point that didn’t make it into most stories...
Ever heard the saying "You never step into the same river twice"? It has taken me a long time to apply its meaning to my experiences with five different forms of cancer as well as a variety of serious late effects of my treatments...
A survey conducted in September 2012 by the Pew Research Center found that 72 percent of Americans had used the Internet in the past year to look for health information. Most of those people begin their search within a search engine like Google and end up with thousands of results. The hard part is figuring out which websites provide up-to-date and credible information.
Have you noticed that the images of most sick people on TV, in drug ads and on health insurance websites look pretty good? There is a big, diverse herd of us out here who are ill and who don't see our experience realistically portrayed by the media. So what?
What's your assessment of the health news and information produced by the media these days? Is it accurate? Useful? Interesting? Improving, or worse than five years ago?
Lately it seems that more health care insiders are advocating for a "less is more" approach for some screening tests. Cancer, dementia and kidney disease are a few examples. But will we just say "no"?
In the world of health care, as in most enterprises where we must interact with one another for mutual benefit, we need words to describe one another. And the words we have for us people who use/need/want health care frankly don't cut the mustard.
Millions of dollars are spent on dietary research, but are we any closer to understanding what a truly healthy diet consists of? A few new studies are turning long-held recommendations on their heads.
Final scores, rankings and rivalries aren't the only fall football traditions getting news coverage this season. Rates, effects and what to do about concussions are in the spotlight too.
That "s.o.b." abbreviation in your chart doesn't indicate what you think it does. Health care has a language all its own consisting of ordinary words used in ways that convey certain shades of meaning. And sometimes they reinforce the paternalism and power imbalance that have historically existed between health care professionals and their patients.
Current efforts to make health care more "patient-centered" include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. What do patients know about the inner workings of health care, after all?
Getting and being sick changes everything in your life, and that includes how you manage your health. For people focused on so-called patient engagement, health empowerment, and social networking in health, the elephant in the room is that most people simply don't self-track health via digital means...
Lately, the public's faith in the safety of prescription and over-the-counter drugs has been making me uneasy. Why do so many of us continue to purchase pills that are not effective in causing weight loss, swallow syrups that promise to cure diabetes, and fiddle with our medication-taking regimens?...
Twitter has figured prominently in the heated discussion about Emma and Bill Keller's respective editorials about Lisa Bonchek Adams. I have followed Lisa for a long time and greatly admire her thoughtful, highly personal tweets about the ups and downs of what it takes for her to face the challenges of metastatic breast cancer. In comparison, I am a different type of tweeter, posting a weekday stream of tweets aimed at addressing generally the subject that Lisa talks about so personally: finding and making the best possible use of health care...
Depression affects nearly one in ten Americans yet many people often go untreated. In fact, a recent study found that 70 percent of people surveyed with symptoms of depression received no treatment of any kind. Here's advice on how to get help...
The Prepared Patient Blog published over two hundred articles in 2013 about what it takes for people to get the most from health care and how the system can be improved to make it feasible for us to do so. Here's a recap of what engagement looks like to us – whether we are sick or well, whether we are caregivers or loved ones: Engagement is not easy and we can't do it alone. Patient engagement is not the same as compliance. It is not a cost-cutting strategy, and it is not one-size-fits-all.
Most professional health care stakeholders believe that the more we patients and caregivers know about our health and diseases, the better our outcomes will be. When faced with the facts about our health risks and dangerous habits, they think we will rationally change our behaviors and correct our misunderstandings. As a patient, I want to know: At what point do I know enough to reap these hypothetical benefits?
My patient, Mary, was a 28-year-old woman who had completed chemotherapy for stage II breast cancer. After discussing surveillance, frequency of follow-up and ASCO guidelines, I recommended against further testing or imaging. Mary was well aware of the evidence, but she had different plans...
Dedicated to promoting behavioral medicine research and the application of that knowledge to improve the health and well-being of individuals, families, communities and populations, Society of Behavioral Medicine created this award to recognize an individual who has made a pivotal contribution to research, practice or policy in the field of health engagement.
How do we know which search results are true and which ones aren't? While you can find high-quality health information online, search results related to nutrition, fitness and preventive health vary widely in quality. And the actions we take (or don't take) as a result of the information we find can be hazardous...
Unfortunately, the nitty gritty of getting good care is not really newsworthy, unless we're talking about how poor it is. However, there are opportunities for journalists and writers to report "news you can use" that would be very helpful to many people, and there is a big gap in reporting on most of these necessary tasks...
I was one of the patients interviewed for the recently published Center for Advancing Health report called "Here to Stay: What Health Care Leaders Say About Patient Engagement". It's an interesting, illuminating and frustrating document to read. My concern, as a person who's pretty darned engaged in my own health care, is not that the phrase is meaningless. It's more that non-patients have co-opted the concept of patient engagement for their own purposes...
Receiving bad health news can spark great upheaval. It is a time when nothing is certain and the future looks dark. The new, free app 'AfterShock: Facing a Serious Diagnosis' offers a basic roadmap through the first few days and weeks, providing concise information and trusted resources to help you regain a bit of control during this turbulent time...
The privacy issues around data flowing out of credit card swipes, social network check-ins, digital health trackers' apps and smartphone GPS geo-location functions are thorny, especially for health – where HIPAA protections don't extend. Here are two real and documented stories from people whose "digital dust" was collected without their knowledge...
"Employers have an opportunity to reduce barriers and support engagement because they sponsor health plans and can provide access to information, tools, technologies, incentives, and more. Employers have more ability to influence engagement than they often believe they have." – Michael Vittoria, Vice President, Corporate Benefits, MaineHealth, Portland, ME
One thing seems to be sure in medicine: if we just wait long enough for excellent science to guide us ahead, things we trust as ironclad rules often change. Case in point...
Today, CFAH launched @PreparedPatient, a new Twitter feed featuring trusted tips, resources, stories and news to help followers find good health care and make the most of it. Prepared Patient was created by the late Jessie Gruman and continues the themes of @JessieGruman tweets...
Finding good health care and making the most of it is critical for each of us. Yet all too often, reliable, unbiased information is hard to find and understand. On the redesigned Be a Prepared Patient website, we have collected trusted resources and tips to help people navigate their way through health and health care decisions and experiences...
As patients we want an answer and a treatment – if not a cure – for what ails us. But sometimes the doctor doesn't know what's wrong, which isn't as rare as we might think. All too often, patients or their families must take charge of their own medical management. Doctors, after all, are human, and some are better diagnosticians than others. Here are some things to do if you or a loved one is struggling with an undiagnosed condition...
I was reluctant to attend. I didn't have leukemia and am not a "touchy-feely" person, which was my perception of a support group. However, I dragged my IV pole of medications and went to this meeting where I met my first fellow myeloma patient named Jim – finally, someone who had the same disease as me. So to this day, whenever I meet with one or a group of myeloma patients, I make the following plea...
I was once someone who never felt that I'd be normal again. But recovery is made up of small steps that lead us to a successful life – these steps toward wellness matter, because being active versus passive about your recovery greatly increases the likelihood of a positive outcome...
Four years ago, I began writing Prepared Patient
posts that dissected the health care marketplace, questioned health care's conventional wisdom and assumptions, and uncovered contradictions in the Affordable Care Act and consumer-is-king theories of health care. The collection of 147 posts describes a health care system that still needs consumer scrutiny and skepticism if the goal of being a prepared patient is to be realized...