[Reblog] A field guide to The Diagnosis Difference (with a request from the the blogger, Ms. Fox for responses)

From the 26 November 2013 posting at Susannah Fox – Internet geologist**. Health care gadfly. Community colleague.

The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference.

Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and tools. But there are lush valleys, too, where engagement and change is happening.

I see e-patients as the guides to those valleys since unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So here’s my request: provide your evidence. Show what you have learned.

First, a quick summary of the report:

1. 45% of U.S. adults have a chronic condition (For some, that’s a revelation and there is still a considerable distance to go before that reality is widely known. For you, that’s not the news. That’s just proof that we have a sample that matches the CDC’s estimate and you can therefore trust the data.)

2. 72% of adults with chronic conditions have internet access, compared with 89% of U.S. adults who report no conditions. There are digital divide implications to this because having a chronic disease is an independent factor in predicting if someone has access — apart from things like age, income, and educational attainment.

3. Clinicians are central resources. People living with chronic conditions are more likely than other adults to consult a clinician when they need help or after they Google for a diagnosis.

4. Self-tracking is a massive activity, particularly for people living with 2 or more chronic conditions, and this group is more likely to use formal means, not just tracking in their heads as many “well” trackers do. For example, 41% of health trackers who report having one or more chronic conditions use pencil and paper and 14% of this group uses a medical device such as a glucometer.

5. Living with a chronic condition has an independent, significant effect on behaviors that are often described as signs of consumer health engagement, like reading up on drug safety, medical treatments, or delivery-of-care reviews. Internet users living with chronic conditions are more likely than others to read or watch someone else’s commentary or personal experience about health or medical issues online.

I want to stop a moment and give some examples of what that might look like.

• Someone living with cancer might follow Lisa Bonchek Adams’s blog, learning abouthow to prepare for having a port placed.
• Someone living with diabetes might check out Diabetes Mine to learn how other PWDs (people with diabetes) rank tech tools and quality of life measures.
• Someone living with a heart condition might read Carolyn Thomas’s blog to gain reassurance that their post-diagnosis PTSD is not in their head.
• Someone living with a lung condition might learn from Propeller Health about why they, in particular, should get a flu shot.
• Someone living with high blood pressure might search Inspire.com for insights on how to keep it under control.

And now we come to the category that personally means the most to me since I’ve spent time in rare disease communities: the 16% of U.S. adults who are living with “other conditions,” like rheumatoid arthritis, epilepsy, or fibromyalgia (to name a very few of thousands). They are hardly ever in the mainstream spotlight. They may have awareness days or weeks or months that their communities honor, but you won’t see the National Football League wearing their colors.

The internet is their spotlight. A blog, a hashtag, a YouTube channel, or a Facebook group can be their lifeline. Yes, they consult clinicians like everyone else, but those who are online know that the path to health — for them — is often found in the advice shared by someone like them or the person they are caring for. The feeding tip that will help their baby get the nutrients she needs to grow. The heating-pad tip that will ease their painsomnia.

As I wrote at the top, unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So let’s open up the landscape.

Please post in the comments what you have learned online from a fellow spoonie, from a fellow caregiver, from a fellow traveler along the path to health. What would you tell someone just diagnosed with your condition to do, especially in tapping into the resources available online? When someone asks you, maybe over Thanksgiving, about why you spend time online, what will you say?
Post it here [at Samantha Fox’s blog] . Links to blogs, videos, tweets — all are welcome.

Thank you.

** From Susannah Fox’s About Page (Internet Geologist definition)

I was at a cocktail party, struggling to describe in just a few sentences what I do for a living, when my friend Paul Tarini broke in and said, “You’re an internet geologist. You study the rocks, you don’t judge them.” Exactly. I study patterns in the online landscape and provide data so people can make better decisions about the social impact of the internet.

My other favorite description of the kind of research I do is “nowist” (meaning: instead of being a futurist, understand what people are doing now and be alert to changes).

“Health care gadfly” describes my role outside the fray, as an observer, hopefully contributing to the public conversation in a useful way.

Ted Eytan coined the phrase “community colleague” for people who collaborate by default. That’s me. My work is enriched by the health geek tribe. I can’t imagine doing the work I do without the help of my community.

Related articles

• How US adults with chronic health conditions share health information online? (gadgetrends.ro)
• Pew Report: Chronic Health Conditions Impact 45% Of American Adults, Contribute To 75% Of Health Care Costs (medicaldaily.com)
• The Diagnosis Difference: Those with Chronic Conditions Have Different Online Habits (drhiphop85.com)
• Increased frailty associated with childhood cancer survivorship (2minutemedicine.com)
• Chronic Conditions and Medical Complexity (rehabcare.com)
• What we see and what we cannot see. What we share and do not share. And why. (snideeffects.com)
• Ill workers ‘feared losing jobs’ (standard.co.uk)

[KevinMD Reblog] The one little question that could save your life

A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)

 

By VAL JONES, MD | PHYSICIAN | at the 12 November 2013 KevinMD.com blog

 

I realize that my blog has been littered with depressing musings on healthcare lately, and so I thought I’d offer up one very positive and “actionable” suggestion for all you patients out there. In the midst of a broken system where your doctor is being pressured to spend more time with a computer than listening and examining you, where health insurance rates and co-pays are sky-rocketing, and where 1 in 5 patients have the wrong diagnosis… There is one “magic” question that you should be asking your physician(s):

“What else could this be?”

This very simple question about your condition/complaint can be extremely enlightening. Physicians are trained to develop extensive “differential diagnoses” (a list of all possible explanations for a set of signs and symptoms) but rarely have time to think past possibilities 1 through 3. That’s one of the reasons why so many patients have the wrong diagnosis – which is both costly in terms of medical bills, time, and pain and suffering.

There is a risk in asking this question – you don’t want to be over-tested for conditions that you are unlikely to have, of course. But I maintain that the cost/risk of living with the wrong diagnosis far exceeds the risk of additional testing to confirm the correct diagnosis. So my advice to patients is to keep this very important question in mind when you see your doctor for a new concern.

 

Read the entire post here

 

Related articles

• Better tests needed to improve patient care, public health (medicalnewstoday.com)
• Mistakes even good doctors make (consumerreports.org)
• Hypochondriacs Rejoice: WebMD is Beefing Up Its Real-Life Doctor Support (betabeat.com)
• Admit when you fall short: The power of “I don’t know” (kevinmd.com)

 

Disease and death in America: A poor bill of health | The Economist

“as Americans live longer, they are living longer with illness.”
“The top driver of disease is a bad diet.”

Related articles

• Disease and death in America: A poor bill of health | The Economist (dralfoldman.com)
• Disease and death in America: A poor bill of health | The Economist (policyabcs.wordpress.com)
• America’s Health Report Card Shows Improvement Needed (voanews.com)
• Higher BMI Increases Risk Of Gallstones, Especially In Women (medicalnewstoday.com)
• United States losing ground to other countries in health outcomes (eurekalert.org)
• U.S. health “mediocre” compared to other wealthy countries (cbsnews.com)
• Embracing disease, not eradicating it. (watsonfor13.wordpress.com)

 

THE POLICY THINKSHOP "Think Together"

Health insurance coverage to help you fix decades of high cholesterol will probably not save your life.  This is the problem that America faces as it is found to be sick because of health behaviors it does not want to change.  We have the freedom to act very unhealthy and to get sick.  How much will increasing insurance coverage really improve our health?

“THE Affordable Care Act, or Obamacare, faces an immediate problem. The deadline for its insurance expansion is January 1st, but each week brings some new obstacle. Even if Obamacare overcomes these, a long-term challenge will remain: the law may not improve Americans’ health. And that health is dismal, as illuminated in vivid new detail on July 10th.

Christopher Murray and his colleagues at the University of Washington have new research on which ailments plague Americans, and why. Dr Murray is due to present his findings at the…

View original post 52 more words

Paleo diet for nutrition and long term health?

“the main reason is that early humans did not suffer from those chronic diseases is that they did not live long enough (life expectancy ~30-40 years). They were also physically active and had lower energy intakes than most people do today.”
Good observation

Deficiency Symptoms and Signs – A Referenced Resource for Professionals and the Public

This morning I came across this nutrition deficiency guide while doing a (somewhat) focused Web search on a Quora question about nutritional deficiencies.
The table (rather longish) lists signs/symptoms along with possible nutritional deficiencies and other possible causes.

According to the terms and use, I am not allowed to copy/paste the table, or provide a direct link to this very informative table.
(This is a commercial site, but ad free).

Here’s how to get to the table

• Go to http://www.stewartnutrition.co.uk/index.html
• Click on Deficiency Signs and Symptoms (left column)

This site has, well, to me, an overabundance of unbiased, reliable nutrition from a medical doctor.

Dr. Stewart is medical practitioner in 1976 from Guy’s Hospital London and became a Member of the Royal College of Physicians in 1979.  He was a founding member of the British Society for Nutritional Medicine.

 

New Statistical Model Developed To Predict Future Medical Conditions

Please remember, just because something is predicted doesn’t mean it is going to happen!

Still, this seems to be a good “tool”.

 

From the 6 June 2012 article at Medical News Today

Analyzing medical records from thousands of patients, statisticians have devised a statistical model for predicting what other medical problems a patient might encounter.

Like how Netflix recommends movies and TV shows or how Amazon.com suggests products to buy, the algorithm makes predictions based on what a patient has already experienced as well as the experiences of other patients showing a similar medical history.

“This provides physicians with insights on what might be coming next for a patient, based on experiences of other patients. It also gives a predication that is interpretable by patients,” said Tyler McCormick, an assistant professor of statistics and sociology at the University of Washington.

The algorithm will be published in an upcoming issue of the journal Annals of Applied Statistics. McCormick’s co-authors are Cynthia Rudin, Massachusetts Institute of Technology, and David Madigan, Columbia University.

McCormick said that this is one of the first times that this type of predictive algorithm has been used in a medical setting. What differentiates his model from others, he said, is that it shares information across patients who have similar health problems. This allows for better predictions when details of a patient’s medical history are sparse.

Related articles

• New statistical model lets patient’s past forecast future ailments (esciencenews.com)
• Algorithm Predicts Future Medical Conditions – Works Somewhat Like Netflix Based on Patient and Other Patient Experiences – Good for Clinical Arena and Words of Caution With Potential “For Profit” Utilization (ducknetweb.blogspot.com)
• Beware of False Positives (infocus.emc.com)
• False Positive Science: Why We Can’t Predict the Future (freakonomics.com)

Why we need truth in labeling of medical conditions

From the Restless Legs Foundation

The author has a point here, labels do affect how we relate to people in everyday life.  For example differently abled creates different images than crippled.

From the 18 February 2012 posting at Kevin MD by TONI BERNHARD, JD

Labels matter. We quickly form judgments based on them. If we hear someone called lazy, the label “lazy person” attaches in our mind even though we may not have even met the person. The same is true for labels given to various medical conditions. If the label for an illness uses language such as “fatigue,” we abstract from our experience and think we know what it’s like to suffer from it.

Some medical disorders have been named after the researcher who discovered or described them in the medical literature (Alzheimer’s). Others are named after a famous patient (Lou Gerig’s disease). The result: instant legitimacy.

The trend, however, is to name illnesses and pain conditions by describing their primary signs or symptoms. There may be sound reasons for this trend, but it can lead to inaccurate labeling of people and to unnecessary suffering by those who’ve been diagnosed with the disorder or disease.

 [The author goes on to describe the inaccuracies of the label “restless legs syndrome”]

Related articles

• More People Say Medical Conditions Make it Difficult To Find a Job or Remain Employed (prweb.com)
• The Difference Between Osteopenia and Osteoporosis (waltershull.wordpress.com)

40% Of Cancers Avoidable, UK Research

From the 8 December 2011 Medical News Today article

New research from a leading charity, Cancer Research UK, suggests that around 40% of all cancers are avoidable. More than 100,000 cases of cancer diagnosed in the UK each year can be directly attributable to cigarettes, diet, alcohol and obesity, and this figure raises to 134,000 when taking into account over a dozen lifestyle and environmental risk factors, according to a review published as a series of research papers in a supplementary 6 December issue of the British Journal of Cancer…..

Related articles

• Cancer causes: the full list from Cancer Research UK (guardian.co.uk)
• Lifestyle and work changes ‘would prevent 40 per cent of cancers’ (independent.co.uk)
• 43% of tumours preventable with better lifestyles (independent.co.uk)
• Lifestyle choices cause 40% of all cancers – Nursing in Practice (nursinginpractice.com)
• 100,000 cancer cases ‘preventable’ (telegraph.co.uk)
• VIDEO: Cancer survivor on lifestyle changes (bbc.co.uk)