Your Health Priorities Tool (AHRQ)

From the US Agency for Healthcare Research and Quality Web page

If you don’t share details about your life and what is important to you, you may not get the treatment that is best for you. Think about it this way: If you are a student who lives near a bus stop, you might be able to take a medicine that makes you a little sleepy because you do not need to drive. But if you are a truck driver, that medicine might make you too sleepy to do your job. Sharing details about your daily life and what’s important to you can help your doctor recommend a treatment that helps you get better and improves your quality of life.

Answer the questions below to get your own health priorities snapshot to share with your doctor.

Click here to go to the Health Priorities Tool

Visit the Full Effective Health Care Program here
This program includes

• Guides for Patients and Consumers (as research reviews and research reports)
• Explanation of Comparative Effectiveness Research 
• Personalization and Social Media Tools to be used with the Effective Health Care Program
  (Mobile device option, email lists, Facebook, Twitter, and more)

Why Physicians Are Reluctant to Share Patient Data: Fine Line Between Protecting Privacy and Public Health

Image via Wikipedia

From the 7 July Science News Today article

 

Family doctors are reluctant to disclose identifiable patient information, even in the context of an influenza pandemic, mostly in an effort to protect patient privacy. A recently published study by Dr. Khaled El Emam the Canada Research Chair in Electronic Health Information at the University of Ottawa and the Children’s Hospital of Eastern Ontario Research Institute recently found that during the peak of the H1N1 pandemic in 2009, there was still reluctance to report detailed patient information for public health purposes.

These results are important today, so we can learn from that experience and prepare for the inevitable next pandemic.

“There is a perceived tradeoff between the public good and individual privacy. If we sway too much on the public good side, then all people’s health data would be made available without conditions,” explained Dr. El Emam. “If we sway too much on the individual privacy side then no health data would be shared without consent, but then this would potentially increase public health risks. Physicians are important gatekeepers of patient information, so we need to better understand the conditions under which they are willing to provide patient data so that everyone wins; we do not need to make these tradeoffs….

Related articles

• Don’t stop anonymizing data (esciencenews.com)
• Don’t stop anonymizing data (physorg.com)

Meet e-patient Dave – a voice of patient engagement (and related resources)

https://ted.com/talks/view/id/1181

e-patient Dave de Bronkart was successfully treated for kidney cancer at a very late stage. He credits his recovery to using the Internet to find trusted medical information as well as to get advice from patients via support groups.

His video Let Patients Help outlines how and why patients should empower themselves.
Some video highlights

• Patients are presently the most underutilized part of the health team
• The e-patient movement is at least partly based on hippie ideals of self-reliance and self-care (think Whole Earth Catalog)
• e-patients are empowered, engaged, equipped and enabled through finding information to use in discussions regarding treatment options with their health care providers
• Support groups often are useful in providing information not available at other sites (as which doctors specialize in certain treatments)
• Patients not only need quality information, but also access to their raw medical data

Related Resources

How to evaluate medical and health information

• Evaluating Internet health information (Penn State)
• Evaluating Medical Research Findings and Clinical Trials (Family Caregiver Alliance)
• A Consumer’s Guide to Taking Charge of Health Information (Harvard Center for Risk Alliance)
• Evaluating Health Information on the Internet (National Cancer Institute)
• Quackwatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions (Stephen Barrett, M.D.)

Great starting places for quality health and medical information

• MedlinePlus (US National Library of Medicine/National Institutes of Health)
  Links to information on over 700 diseases/conditions, drugs & supplements, videos & tools (as health calculators, anatomy     videos, directories (as Find an Eye Doctor), and links to organizations

• UpToDate For Patients
  Click on the Patient Information tab to find free information written for patients. These topics help one to learn more about a medical condition, better understand management and treatment options, and have a better dialogue with health care providers. This free information is adapted from the subscription based service UpToDate (which is for and by physicians and researchers).
• US Centers for Disease Control and Prevention (CDC)
  Includes Health Topics A to Z, and sections  as Diseases and Conditions as  Healthy Living
• eMedicine Consumer Health
  Comprehensive continuously updated health and medical information written by physicians. Information on specific diseases/conditions includes overviews, causes, diagnosis, treatments, outlook, and additional links. Slideshows, images, pictures,medications, and quizzes.
  emedicine.com is geared towards health professionals. However it is free to all who register.

•  But Wait, There’s More!
• Online consumer health guides, as Consumer Health (University of Toledo), Consumer Health (University of Florida), Consumer Health Guide (University of California)
  Libguides are written by librarians on every subject imaginable. They are free to all.
• Never underestimate the finding power of a librarian.

Many academic and medical institutions offer at least some reference services to the general public.  Be sure to ask for a reference librarian. He or she not only has a master’s degree in Library Science, but often additional related education in health related areas.

Online Health Communities/Support Groups

• Self-Help Group SourceBook Online
  A starting point for finding every type of national, international, model and online self-help support group that is available starting point for finding every type of national, international, model and online self-help support group that is available. (MentalHelp.net)

• MedlinePlus 
  Search with a phrase as “support groups” cancer or select a Health topic and select an organization.
• Medpedia communities
  This site allows people with common health interests to share information and communicate. Anyone may create a community of interest and anyone may join.Medpedia is an open platform connecting people and information to advance medicine. Users include health care professionals, health care organizations, expert lay persons, students, and scientists.
• MedHelp International
       This online health community which not only provides health information but helps patients actively manage their health through online personal health records andMedhelp trackers (iphone friendly options).
  The People option allows one to search by a disease or condition to find related information (including symptoms, treatments, resources). One can also view postings and blogs by other members and interact with them.
  Medical experts helps users by answering questions in Ask-an-Expert forums, participating in conversations with members in free live health chats, and sharing their knowledge and the latest news in blogs
• Mayo Clinic Online Community is ” free and is open to anyone, whether you have been a patient at Mayo Clinic or not. It includes content from various Mayo Clinic blogs,health and medical videos from Mayo’s YouTube channel and links to news articlesabout Mayo Clinic research and treatment advances. It also features a discussion forum where members can connect with others who have similar interests or concerns.”

A few related postings from my blog

• [How to] Explore Your Treatment Options
• Free Online Anatomy Sites 
• How to obtain free/low cost articles from medical journals
• Plain language summaries Web sites explain medical studies for all 

Harnessing The Power Of Open Data

From the 9 June 2011 Medical News Today article

 

The U.S. Department of Health and Human Services (HHS) and the Institute of Medicine (IoM) today co-hosted their second annual event focusing on innovative applications and services that harness the power of open data from HHS and other sources to help improve health and health care.

The Health Data Initiative Forum featured more than 45 new or updated solutions that harness the power of HHS and other federal data to help serve the needs of consumers, health care providers, employers, public health leaders, and policy makers.

“The Health Data Initiative Forum demonstrates our strong commitment to promoting innovative uses of data to advance health and health care in America,” said HHS Secretary Kathleen Sebelius. “This initiative is helping consumers take control of their own health and health care by putting the right information at their fingertips, helping doctors and hospitals deliver better and safer care, helping employers promote health and wellness, helping mayors and county commissioners make better-informed decisions that improve the health of communities.”

The forum also featured panel presentations from leaders in information technology development, privacy, venture capital financing, health care delivery systems, state and local government, and public health. Other federal cabinet secretaries participated in the promotion of the use of their agencies’ data, including Environment Protection Agency (EPA) administrator Lisa Jackson, who announced her agency’s new effort to encourage innovators to leverage EPA data to help power useful solutions for the public.

The forum included nearly a dozen announcements of major new initiatives being launched using federally supplied health data. Among these announcements were the public and private sponsorship of new “challenges” to develop data-powered solutions that help improve health, including challenges issued by Walgreen’s Pharmacy, Aetna Foundation, Sanofi-Aventis, and the National Cancer Institute.

Additional key announcements made at the forum included the University of Michigan’s debut of the nation’s first graduate program to focus on consumer health informatics; the launch of Start Up Health, a new seed accelerator/entrepreneur academy in New York City aimed at developing new health and wellness startups; ESRI’s release of a new public community health analytics tool called Community Analyst; and an upcoming “invent-a-thon” focused on developing nursing homes of the future, hosted by Johns Hopkins University and the National Collegiate Inventors and Innovators Alliance.

Radiation Oncology Patient Web Site earns Web Health Award

From the December 15, 2010 Eureka news alert

The American Society for Radiation Oncology (ASTRO) has received a 2010 Web Health Award for its patient-geared website, www.rtanswers.org.

The Web Health Awards is a national competition that recognizes high-quality electronic health information. Over 500 entries were submitted for the 2010 competition from a variety of health care professionals nationwide. The winners were selected by a panel of national electronic health information experts. [A complete listing of the winners may be found here ]

This year, ASTRO received a bronze award for RT Answers, a site designed specifically for cancer patients and their families, friends and caregivers. RT Answers began in 2004 as a way to explain to cancer patients and their families and friends how radiation therapy is used to treat cancer safely and effectively. Receiving a cancer diagnosis can be frightening and confusing, so physicians and other members of the radiation therapy treatment team created RT Answers as a one-stop site where patients can receive radiation therapy information.

Here are some highlights from the RT Answers Web site

• Online dictionary of words people may hear during their treatment
• Treatment information , including
  • What to expect before, during, and after treatment
  • Facts about cancer types most commonly treated with radiation as breast cancer and lung cancer
  • Descriptions of members of the treatment team as radiation oncologists and dosimetrist
  • Treatment types as External Beam Radiation Therapy
  • Side Effects

Among other winners in the medical/health care fields for Summer 2010

(Flahiff’s note: I was disappointed in a few awardee sites [not listed below] some had pages with no content, some did not have an about page; keep in mind there is an entry fee of $58.00 for submissions)

• The Recovery Month (US Health and Human Services)”aims to promote the societal benefits of alcohol and drug use disorder treatment, laud the contributions of treatment providers, and promote the message that recovery from alcohol and drug disorders in all its forms is possible.”
  Includes Recovery Resources for the public (they are also on Facebook, YouTube,and Twitter)
• Home Safety Council has information on how to maintain a safe home in formats as fact sheets, guides, quizzes, videos, and interactive media
• Iowa Health System has links to health information (as an online health library and health videos) and a newsroom (with health care reform summaries)
• National Diabetes Education Program includes publications, resources, and fact sheets. One may do a tailored search with drop down menus (age, ethnicity, language, and diabetes status)

 

 

“Summaries for Patients” and other plain language summaries help patients and others understand medical studies and guidelines

Heard or read about research on a medical topic but not sure if the news is reliable? Looking for trusted information on a treatment or drug carefully reviewed by experts? Do scientific articles seem to contain good information, but they are hard to understand?

Not sure where to go next?  You are not alone.

These plain language summaries are great places to start for medical and health information that has been rewritten for those of us who are not scientists or health care professionals. Much of the information is free, and often there are great links to reliable Web pages for additional information.

• Summaries for Patients  are short plain language summaries of medical research and guides for doctors.

                    These summaries will help you

• Discover how researchers did the published study and what they found, including
  • What the problem was and why it is studied
  • Who was studied and why the study was done
  • What the scientists found and what the limits of the study were
• Find overviews about clinical guidelines -official recommendations for doctors in treating patients

To locate a specific summary

• Go to Patient Information
• Follow the directions under the Summaries for Patients heading

•  patientINFORM plain language summary Web sites  are provided only by participating science and medicine publishers.

These summaries are provided to help patients or their caregivers more fully understand  research results. They also provide links  to the full text of  many research articles.
Some full text articles are free. Others require a reduce-fee payment (much less than ordering from the publisher!).
(Always check to see if you can get the article for free or at even lower cost from your area public, medical, or academic library – most libraries will try to help anyone who contacts them directly)

Cochrane Summaries^beta

Independent high-quality evidence for health care decision making

• Cochrane Collaboration provides well researched reviews of the strongest evidence available about healthcare interventions (as drugs, medical tests,  and medical procedures).  Every available treatment/test has not yet been reviewed. However each review is conducted in depth by experts.            

              To find plain language  and audio summaries of Cochrane Reviews

• Go to the Cochrane Reviews Home page and scroll down to Browse Free Summaries
  
• Click on a topic OR scroll down and click on All Summaries
• The All Summaries page will allow you to
  • Search by entering words and short phrases (as headache, multiple sclerosis drugs, asthma acupuncture
  • Browse by Health Topics (left column)
  • Include only these in the search results
    • Podcasts – audio summaries
    • PEARLS – guidance and advice for real time decisions

Related Blog Items 

• How to read a research paper (and also understand medical/health news items)
• HealthNewsReview.org – Independent Expert Reviews of News Stories (jflahiff.wordpress.com)

Cannot find a plain language summary with the above resources?

Consider asking a reference librarian for help at your local public, academic, or hospital library. Many academic and hospital libraries provide at least limited reference service to the public.
Call or email them for information about their services.

You may also contact me at jmflahiff@msncom.  I will do my best to reply within 48 hours.

Authoritative, Current Health Information Available on Mobile Devices

Looking for health information while at the doctor’s office, pharmacy, or elsewhere when all you have is a mobile device?

The following mobile Web sites & resources from the US National Library of Medicine may just provide the information you are looking for.

**MedlinePlus Mobile provides information on over 750 diseases, conditions, and wellness areas. It also provides drug information and links to health news items.

**PubMed® for Handhelds Web site is a website for searching MEDLINE® with the web browser of any mobile device.
MEDLINE® is the largest database of  scholarly biomedical citations/abstracts in the world. Links to the full text of most articles are by subscription only. Check with your local library on how to get full text of articles not available at PubMed®.

**Wireless System for Emergency Responders (WISER)****** is a software program for Palm Powered or Pocket PC devices to assist first responders in hazardous material incidents.

**NCBI Bookshelf downloadable versions of books from the NCBI Bookshelf for any mobile device.
From the National Center for Biotechnology Information.

******March 22 2011 WISER update from the National Library of Medicine (via their NLM-TOX-ENVIRO-HEALTH-L listserv)

The National Library of Medicine (NLM) Wireless Information System for Emergency Responders (WISER) 4.4 is now available. It can be downloaded to the WISER Windows, Pocket PC, and SmartPhone platforms from the WISER Web site.   http://wiser.nlm.nih.gov/

The updated online version, WebWISER, is available at  http://webwiser.nlm.nih.gov/getHomeData.do

Highlights of this version include:

1) A new, interactive Chemical Reactivity capability (WISER for Windows); users can
a) Create their own mix of chemicals.
b) See an overview of the resulting potential hazards
c) Delve into the detailed reaction behind each hazard or gas produced.

2) 19 new substances and mixtures of substances, including Crude Oil and the Corexit 9500 and Corexit 9527 dispersants.

Find more information at http://wiser.nlm.nih.gov/whats_new_4_4.html
WISER for iPhone/iPod touch 1.1 is now available from Apple’s App Store.

All WISER platforms now include:

1) The 19 new substances and mixtures of substances.

2) Data updates based on the latest information from the NLM Hazardous Substances Data Bank (HSDB), the Center for Infectious Disease Research and Policy (CIDRAP), and the U.S. Environmental Protection Agency (EPA) Acute Exposure Guideline Levels (AEGLs).

3) Many usability improvements and fixes.

You can follow the activity of the National Library of Medicine Specialized Information Services Division via Twitter (NLM_SIS). http://twitter.com/NLM_SIS

Related Articles

• PubMed Toxicology Subset Streamlines Biomedical Searches in the Professional Literature (jflahiff.wordpress.com)
• National Library of Medicine Updates (aa47.wordpress.com)
• Japan Disasters Topic Page from the US National Library of Medicine (NLM) (jflahiff.wordpress.com)
• PubMed Health Provides Disease and Treatment Information for Consumers (jflahiff.wordpress.com)
• National Library of Medicine Website Redesigned (aa47.wordpress.com)
• PubMed Mobile Beta (jflahiff.wordpress.com)
• Access Full Text Life Science and Healthcare Texts Using A New NCBI Bookshelf Homepage (jflahiff.wordpress.com)
• More Resources from NLM for Japan (aa47.wordpress.com)