[Partial Reblog] The Power of Patient-Expert Books

(And no, I am not advertising these books, or endorsing the contents of these books, only pointing to a trend!)

From the 4 January 2013 Huffington Post article by Riva Greenberg

Today, more and more books are being written by patients — well-educated, informed patients who manage their illness successfully and have experience, practical knowledge and insights to share with other patients.

As the new year incites a rush to become a “new, better and healthier you,” we often do so learning from our peers. When it comes to illness-warranted behavior changes, as like seeks like, it’s often easier to make changes learned from fellow patients with whom you share the experience of a disease. Like support groups and mentor programs, this is fertile soil for positive behavior change. So, I applaud the rise of patient-authors.

Patient-authors also narrate the experience of illness. That is why I hope health care professionals (HCPs) are also reading books written by patients. A book like No-Sugar Added Poetry, for example, can give HCPs immediate access to some of the emotional landscape of living with diabetes.

There is, in my mind, no easier or quicker way to tap into the experience of illness — what patients grapple with, how they feel, and the practical things that must be managed every day — than by reading a patient-written book.

When clinicians do, I believe they will become more mindful and compassionate and the relationship with their patients more trusting. And that can lead to better outcomes for both….

Read the entire article here

 

Health Resources in Multiple Languages

Those of you who follow my blog notice that from time to time I highlight multilingual health information Web sites as Healthy Roads Media.

Recently (via a US govt listserv- PHPartners) I ‘ve come across a wonderful list of general health information resources in multiple languages. This resource list is a subset of the larger  Multi-Cultural Resources for Health Information. Multi-Cultural Resources includes links in the following areas

• Cultural Competency
• Dictionaries, Glossaries, and Online Translation Tools
• Health Literacy
• Health Resources in Multiple Languages
• Interpreting in Health Care
• Law, Policy, and Standards
• Limited English Proficiency
• Multicultural Research
• Organizations and Portals
• Refugee Health Portals
• Disclaimer

Oh, I haven’t forgotten. Here is the list of Health Resources in Multiple Languages.

 

• Center for Food Safety and Applied Nutrition Documents in Other Languages 
  Center for Food Safety and Applied Nutrition, U.S. Food and Drug Administration
• Consumer Health Information in Many Languages
  Multilingual online health resources, organized by specific
  languages, including glossaries
  National Network of Libraries of Medicine, National Library of Medicine
• EurasiaHealth Knowledge Network 
  Clearinghouse of free resources on Central & Eastern Europe and
  the New Independent States
  American International Health Alliance
  United States Agency for International Development
• Facts for Families 
  In English, Spanish, German, Malaysian, Polish, and Icelandic
  American Academy of Child & Adolescent Psychiatry
• Health Access Project
  Translated Hospital Instructions
• Health Information Translations 
  Information for limited English proficiency patients translated into various languages
  The Ohio State University Medical Center, Mount Carmel Health System
  OhioHealth
• Health on the Net Select 
  Searchable database of medical and health queries
  Available in English, French, German, Spanish, and Portuguese
• Health Translations Directory 
  From Australia. Contains links to online multi-lingual resources
  Department of Human Services
  State Government of Victoria, Australia
• Healthy Roads Media 
  Site contains free health education materials in a number of languages
  and a variety of formats
  Healthy Roads Media
• Heart and Stroke Foundation of Canada 
  Material available in English and French. French link found at bottom of page
  Heart and Stroke Foundation of Canada
• Multilingual Health and Safety Resource Guide
  Labor Occupational Health Program, Center for Occupational and Environmental Health
  University of California at Berkeley
• Multilingual Health Information
  Stanford Health Library, Stanford University
• Free Publications for Women
  Easy-to-read pamphlets, available multiple languages
  Office of Women’s Health, U.S. Food and Drug Administration
• Patient Information Brochures for Gastrointestinal and Endoscopic Surgery 
  Material available in English, French, Polish, Spanish, and Vietnamese
  The Society of Gastrointestinal and Endoscopic Surgeons
• Resources by Language
  Health topics in 50 languages
  NSW Multicultural Health Communication Service
  New South Wales, Australia
• Translated British Columbia Health Files
  Fact sheets translated into Chinese, French, Punjabi, Spanish, and Vietnamese
  Ministry of Health, British Columbia, Canada
• Urban Health Partners
  Spotlight on Arabic language health materials and Arab American health.
  Additional materials on Culturally Responsive Health Care
  Vera P. Shiffman Medical Library, Wayne State University
• Vaccine Information in Other Languages
  Vaccine information in over 30 languages
  Immunization Action Coalition
• West Nile Virus Multilingual Fact Sheets
  Patient education materials about West Nile Virus in 22 languages
  Ontario Ministry of Health and Long-Term Care
  Government of Ontario, Canada

Related articles

• 5 tips for engaging with multilingual audiences on social media (prdaily.com)
• More Resources On Different Cultures (larryferlazzo.edublogs.org)
• Web Resources for African Languages‏ (metaglossia.wordpress.com)
• “I Read It on the Internet, So It Must Be True”: The Importance of Media Literacy (healthed.typepad.com)
• Digital Health Literacy: Separating Fact From Fiction (healthed.typepad.com)
• Internet Health Information: Be a Savvy Consumer! (julia5150.com)
• More Consumers Get Health Info On Mobile Devices (informationweek.com)

 

Consumer Health Digest Archive (and Links to Related Health Fraud Information Sites)

Enhancing Freedom of Choice through Reliable Health Information Subscribe to Consumer Health Digest

From the archive http://www.ncahf.org/digest12/index.html

Consumer Health Digest is a free weekly e-mail newsletter edited by Stephen Barrett, M.D., with help from William M. London, Ed.D., M.P.H.. It summarizes scientific reports; legislative developments; enforcement actions; other news items; Web site evaluations; recommended and nonrecommended books; research tips; and other information relevant to consumer protection and consumer decision-making. The Digest currently has 11,082 subscribers. Items posted to this archive may be updated when relevant information becomes available.

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Issue #12-35, October 11, 2012

• Pediatricians warn against home trampoline use
• High-quality fluoride information posted
• “Life coach” loses suit against nutrition licensing board
• FTC halts dubious insurance plan

Issue #12-34, October 4, 2012

• Romney campaign embraces Lyme quackery
• Vitamin D supplementation fails to prevent colds
• Quantum quackery criticized

Issue #12-33, September 27, 2012

• Stem cell scammers plead guilty
• Prominent psychiatric critic dies
• Medifast subsidiary settles FTC charges

Issue #12-32, September 20, 2012

• Portland City Council votes to fluoridate.
• Physicist details why homeopathy is impossible
• Massachusetts will post more about disciplinary actions

Issue #12-31, September 6, 2012

• IOM publishes health-care system critique
• Ginkgo flunks another big Alzheimer’s prevention trial
• AMA specialty journals will be renamed in 2

 

Related Resources

• Don’t be fooled by health fraud scams (jflahiff.wordpress.com)
• Evaluating Health Information on the Internet (US National Cancer Institute)
  This fact sheet contains information to help people decide whether the health information they find on the Internet or receive via e-mail from a Web site is likely to be reliable.
• Quackwatch (a private corporation operated by Stephen Barrett, MD)
• Consumer’s Guide to Taking Charge of Health Information (Harvard Center for Risk Analysis)
• The Penn State Medical Center Library has a great guide to evaluate health information on the Internet.
  • The tips include
    • Remember, anyone can publish information on the internet
    • If something sounds too good to be true, it probably is.
    • If the Web site is primarily about selling a product, the information may be worth checking from another source.
    • Look for who is publishing the information and their education, credentials, and if they are connected with a trusted coporation, university or agency.
    • Check to see how current the information is.
    • Check for accuracy. Does the Web site refer to specific studies or organizations?
• The Family Caregiver Alliance has a Web page entitled Evaluating Medical Research Findings and Clinical Trials
  Topics include
  • General Guidelines for Evaluating Medical Research
  • Getting Information from the Web
  • Talking with your Health Care Provider
• …And a Rumor Control site of Note (in addition to Quackwatch)

   

  National Council Against Health Fraud

  National Council Against Health Fraud is a nonprofit health agency fousing on health misinformation, fruad, and quackery as public health problems. Links to publications, position papers and more.

Related articles

• Regulation of alternative medicine: why it doesn’t work, and never can (dcscience.net)
• GlaxoSmithKline Plea – Largest Health Care Fraud Settlement (lawprofessors.typepad.com)
• “What Doctors Don’t Tell You” magazine – reviewed in BMJ and Quackometer (jflahiff.wordpress.com)
• Health care fraud infographic (pathologyblawg.com)
• Dr. Stephen Barrett of Quackwatch Fame Still Needs Help (lizditz.typepad.com)

 

Ask a Scientist [Howard Hughes Medical Institute]

 

From the Web page

Ask a Scientist connects you to some of the top scientists in the country, and each of them is connected to the Howard Hughes Medical Institute. If you’ve got a question about medicine, human biology, animals, biochemistry, microbiology, genetics, or evolution, then please, Ask A Scientist

Links include

• Homework Help
• Science Fair Projects
• Personal Health

 

14 Ways Social Media May Soon Change Your Doctor’s Visit

Although this article has a good deal of advertising and most links are to commercial sites, the content seems to be a good summary of possible futures of doctor visits. Overall it seems that social media can improve the doctor-patient relationship.

From 14 Ways Social Media May Soon Change Your Doctor’s Visits  (May 15, 2012 article at The Sociable Blog)

In 2006, Pew Research Forum discovered that 80% of American adults used the Internet to research medical information. By 2011, data (separately) compiled by Frost and Sullivan and QuantiaMD showed between 87% to 90% of physicians used at least one social media site for personal reasons, with a further 67% to 75% opting for more professional postings. LinkedIn, Facebook, YouTube, Twitter, blogging, and the like stand poised to change the face of healthcare in the exact same manner it pretty much did for most other industries.

 

Medical professionals — not just doctors — have discovered some creative (and not-so-creative) ways to apply the technology to many different aspects of their field, meaning savvy, Internet-literate patients should stay on the lookout for what might lay ahead.

1. Better Information and Support……

Related articles

• QUOTE: patient-doctor relationship and social media (scienceintelligence.wordpress.com)
• The Social Health Correction (33charts.com)
• How Healthcare Professionals Can Improve Patient Relationships (scrubnotes.com)

The Benefits of Texting (Including Better Health)

Cell phones, as most tools, have advantages and disadvantages depending on how they are used.
This infographic outlines their “power for good” when “texting responsibly”.

From the Staff Writers at Online Courses

 

<img src=”https://s3.amazonaws.com/infographics/Benefits-Of-Texting-800.png” alt=”The Benefits of Texting” width=”500″ border=”0″ />
From: OnlineCollegeCourses.com

Grasping and even celebrating uncertainty ( How Journalists Can Aid Critical Thinking in Healthcare Decisions) With Resources By Yours Truly

As you regular followers of this blog realize, I champion critical thinking and hope at least some of these blog posts have fostered this approach to selecting what is best for one’s health.
Many of my posts caution against quick fixes, be it fad diets, supplement dependence, or use of potentially harmful complementary medicine substances. To be fair, I have also posted items questioning “Western medicine” practices as when robotic surgery is appropriate.

Gary Schwitzer at HealthNewsReview.org has posted yet another item on how journalists can help us all in healthcare decisions..
Excerpts

Marya Zilberberg posted, “Fast science: No time for uncertainty.”  Excerpt:

“…my anxiety about how we do clinical science overall is not new; this blog is overrun with it. However, the new branch of that anxiety relates to something I have termed “fast science.” Like fast food it fills us up, but the calories are at best empty and at worst detrimental. What I mean is that science is a process more than it is a result, and this process cannot and should not be microwaved….

So, let’s celebrate uncertainty. Let’s take time to question, answer and question again. Slow down, take a deep breath, cook a slow meal and think.”

That’s similar to how I ended my talk at the University of Wisconsin’s event, “Science Writing in the Age of Denial” this week.  I said that:

“Journalists could help people grasp uncertainty and help them apply critical thinking to health care decision-making issues…rather than promote false certainty, shibboleths and non-evidence-based, cheerleading advocacy.”

My talk to University of Wisconsin event, “Science Writing in Age of Denial”

View more PowerPoint from Gary Schwitzer

Related Resources (from my Health/Medical  News & Resources Web site)

• The Penn State Medical Center Library has a great guide to evaluate health information on the Internet.

  The tips include

  • Remember, anyone can publish information on the internet!
  • If something sounds too good to be true, it probably is.
    If the Web site is primarily about selling a product, the information may be worth checking from another source.
  • Look for who is publishing the information and their education, credentials, and if they are connected with a trusted coporation, university or agency.
  • Check to see how current the information is.
  • Check for accuracy. Does the Web site refer to specific studies or organizations?
• The Family Caregiver Alliance has a Web page entitled Evaluating Medical Research Findings and Clinical Trials

Topics include

• General Guidelines for Evaluating Medical Research
• Getting Information from the Web
• Talking with your Health Care Provider

• Consumer’s Guide to Taking Charge of Health Information (Harvard Center for Risk Analysis)
• How to Evaluate Health Information on the Internet (US National Cancer Institute)9iiu9
• Quackwatch (a private corporation operated by Stephen Barrett, MD)

…And a Rumor Control site of Note (in addition to Quackwatch)

National Council Against Health Fraud

National Council Against Health Fraud is a nonprofit health agency fousing on health misinformation, fruad, and quackery as public health problems. Links to publications, position papers and more.

Health in a Hair Salon: Outreach Project Rooted in Beauty Shop

From the article at NLM Focus

…Finding health information in a hair salon may seem like an odd combination, but it makes perfect sense. In addition to owning MaFlo’s, Lance-Robb teaches health and computer classes at the local library on her day off. And the computers with Wi-Fi Internet access at MaFlo’s are part of an innovative program that seeks to bring health information to underserved people. The funding comes from the National Network of Libraries of Medicine (NN/LM), Southeastern/Atlantic Region (SE/A). The National Network of Libraries of Medicine, anchored by eight Regional Medical Libraries and coordinated by the National Library of Medicine, was created to help health providers and the public access health information no matter where they live or work. “We try to go to where the people are,” says Nancy Patterson, the Community Outreach Coordinator for Southeastern/Atlantic Regional Medical Library. ”I call it ‘thinking inside the blocks.’” …

Related articles

• Barbers: Cut, Shave, Lower Your Blood Pressure (jflahiff.wordpress.com)

• Cleveland-area beauty salon, barbershop workers trained to talk to clients about health screenings (Cleveland.com)

Google knows more about certain diseases than physicians ever will

Hmm…  interesting “point” “counterpoint” items on finding health information on the Web

• Google knows more about certain diseases than physicians ever will
• Don’t rely on Dr Google for health information on the wild, wild web

Overall, I think Google and other search engines are doing a better job of locating health information.
However, it is good to keep in mind that search engines rank items, they do not evaluate them!
So, search safely, knowing that search engines do not index 100% of what is available on the World Wide Web.

If you do decide to find health information on the Web, please evaluate content carefully!
Health Information is best used in consultation with a professional health care provider (or 2!)

A few good guides on evaluating health information may be found at

• Evaluating Health Information(MedlinePlus)
• Understanding Medical Research (patientInform)
• Toolkit - a number of tipsheets, primers, links and other resources to help journalists and consumers do a better job of evaluating claims about health care interventions. (HealthNewsReview.org)
• [from] Evaluating Health Information on the Internet (Penn State University)

Unlike information found in medical textbooks, which has been evaluated and edited by professionals, the information on the Internet is unfiltered. It is up to the user to evaluate and judge how good the information really is. When looking for health information it is particularly important to think about the information critically and examine the Web site carefully. Listed below are some questions and tips to think about when searching for good health information on the Internet.

What type of site is it? Is it a government site, educational or commercial? Look at the web address for the extension. The most common are .gov for government, .edu for educational, .com for commercial and .org for organizational.

Who is sponsoring the site? A good Web site will make sponsorship information clear. There should also be an address (besides an e-mail address) or a phone number to contact for more information.

What are the credentials of the sponsor or author of the material on site? If it is an organization or association, is it nationally recognized or is it a local group? Also, are the author’s qualifications relevant to the topic being discussed? For example, someone with a Ph.D. in psychology should not necessarily be accepted as an expert on nutrition.

What is the purpose of the site? Is it a public service or is it trying to sell something? If there is advertising on a page, something that is more and more common even with non-commercial sites, it should be clearly separated from the informational content. Also, it is easy to disguise promotional material as “patient education” on web sites. If a product or treatment is given a good review on one site, try to find other sites that also approve of it.

How current is the information? A good site will list when a page was first established and when it was last up-dated. If there are links to other sites, are they up-to-date?

How accurate is the information? This can be hard to determine if you’re not familiar with a topic but there are some things to look for. For example, is the information free of spelling errors and typos? Mistakes of these kind can indicate a lack of quality control. Are the sources of factual information listed? For instance, if a document states, “recent studies indicate…”, are the sources for the study listed so they can be verified? If a topic is controversial, is the information presented in a balanced way? There are many controversies in regard to treatment options; however, a good site will present the pros and cons of a particular option. Be cautious with sites that claim “miracle cures” or make conspiracy claims.

Evaluate each site separately. Links can often lead from a good site to ones of lesser quality.

Look for awards or certificates that a site has received. For example, the HON Code logo is displayed by sites that have agreed to abide by eight principals set by the Health on the Net Foundation. These principles set standards for accuracy, bias, sponsorship and confidentiality. When using a directory or search engine that rates sites, read the page that discusses what criteria are used to determine a site’s rating.

The Internet is a wonderful source of information and, when used carefully, can be very helpful in answering health-related questions. But the information found on the Internet should never be used as a substitute for consulting with a health professional. And, whenever using the Internet, keep in mind the caveat, “It is so easy to post information on the Internet that almost any idiot can do it, and almost every idiot has.”

Related articles

• Misleading information on health social sites (and tips on how to evaluate health/medical information) (jflahiff.wordpress.com)
• Search Engine Optimization And The Best Tips Available Today (ronmedlin.com)
• Basics of SEO (primeempire.com)
• What is the best health information on the internet? The ‘I have’ project (stwem.com)
• The Secret Lives of Healthcare Information Seekers (marketingvox.com)
• Don’t just Google: Try Google Scholar (onlinecollege.org)

 

And finally, a few good places to start finding reputable, timely health information

Centers for Disease Control and Prevention (CDC) is the US governments primary way to communicate information on diseases, conditions, and safety. Information may be found in areas as …. Data and Statistics Diseases and Conditions (with an A-Z    index) Emergencies and Disasters Environmental Health Healthy Living Injury, Violence and Safety eMedicine Consumer Health has over 900 health and medical articles. Most articles include causes, symptoms, treatment options, prevention, prognosis, and more. Information may also be browsed by topic (Topics A-Z).  Additional features include picture slideshows, health calculators, and more. Familydoctor.org includes health information for the whole family Short generalized information on Diseases and Conditions (with A-Z index), Health Information for Seniors, Men, and Women, Healthy Living Topics, pages geared to Parents & Kids, and videos.  Numerous health tools in the left column (as health trackers, health assessments, and a Search by Symptom page.   Healthfinder.gov is a US government Web site with information and tools that can help you stay healthy. Resources on a wide range of health topics carefully selected from over 1,600 government and non-profit organizations. Social media options to connect you with people and organizations that can help you on your journey to living a healthier life. Content includes information on over 1,600 health-related topics, Quick Guide to Healthy Living, and free interactive tools to check your health, get personalized advice, and keep track of your progress. KidsHealth provides information about health, behavior, and development from before birth through the teen years. Material is written by doctors in understandable language at three levels: parents, kids, and teens KidsHealth also provides families with perspective, advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens.

 

amednews: Why patients are turning less to media and friends for health information :: Dec. 26, 2011 … American Medical News

 

Image via Wikipedia

amednews: Why patients are turning less to media and friends for health information :: Dec. 26, 2011 … American Medical News

Excerpts from the 26 December 2011 news item of the American Medical Association (AMA)

Consumers’ access to physicians and the quality of information available are affecting their level of interest in seeking outside guidance on their conditions.

By PAMELA LEWIS DOLAN, amednews staff. Posted Dec. 26, 2011.

 

As patient visits to physicians have declined, so has their interest in finding information relating to their health.

The waning interest in information-seeking as patient visits fall is what the Center for Studying Health System Change called a “surprising” conclusion to a survey of 17,000 patients released in November. Visits to physicians dropped 4% between 2007 and 2010. Meanwhile, the percentage of American adults seeking information about a personal health concern in the previous 12 months decreased from 55.5% to 50% in the same period, it said.

Analysts said there probably are multiple reasons for that. The trend could reflect that when patients are less able to see a physician, they are less likely to be engaged in their health. It could be that with physician visits down, patients have more time to spend with their doctor, meaning they have less of a need for outside sources of information.

And they said the decline could reflect that so much information is available — and so much of it conflicting — that some overwhelmed patients may be opting out altogether from researching their health.

For physicians, analysts said, the implication of the study is that when patients come into their offices, they are going to rely on them more than ever for help in managing their health.

1 in 5 patients has delayed or canceled a doctor visit, medical test or procedure in the past year.

The sources of information the center studied were the Internet, print media, television and radio, and friends and relatives. Internet was the only source that went up, to 32.6% from 31.1%. But center researcher Ha T. Tu wrote that the growth failed to keep pace with a strong rise in residential broadband Internet access, which went up from 47% to 66% between 2007 and 2010….

Read the entire news article

Related articles

• How much guidance do patients want with their medical decisions? (jflahiff.wordpress.com)
• Epatients: The hackers of the healthcare world [O'Reilly Radar] (jflahiff.wordpress.com)