The Empowered Patient Strikes Back (Book and Web site)

From the 21 December 2012 post at The Health Care Blog

…Julia Hallisy learned about patient safety the hard way. Hallisy’s daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation…

…Hallisy decided to write a book that might help others. In 2008,  I reviewed it on HealthBeat…

..

At the time I wrote: “Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient’s advocate needs to know about how to stay safe in a hospital.”

Recently, Hallisy emailed to tell me know that the book has now become a non-profit foundation: The Empowered Patient Coalition.

Go to their website and you will find fact sheets, checklists, and publications including, A Hospital Guide for Patients and Families that you can download at no charge. I found the Hospital Guide eye-opening. I have read and written a fair amount about patient safety in hospitals, but it told me many things that I did not  know…

[Great outline of doctor/nursing hierarchy]

[Questions Patients and Advocates Should Ask]

[What To Look For In Your Medical Record]

Related articles

• Oops! US Doctors Screw Up Surprisingly Often: Study (livescience.com)
• Patients as customers: surfing for hospital emergency departments with shorter wait times (blogs.vancouversun.com)
• My experience as an empowered patient (worldofdtcmarketing.com)
• How to Make Your Hospital Stay Safer and Cheaper: A Checklist (pbs.org)
• Hospitals Are Killing Us (lewrockwell.com)

 

Doctors Are Cautious, Patients Enthusiastic About Sharing Medical Notes

From the 19 December 2011 Beth Medical Newsletter

Study gauges baseline interest in three-site OpenNotes trial

Date: 12/19/2011
BIDMC Contact: Jerry Berger
Phone: 617-667-7308
Email:jberger@bidmc.harvard.edu

BOSTON – Patients are overwhelmingly interested in exploring the notes doctors write about them after an office visit, but doctors worry about the impact of such transparency on their patients and on their own workflow, a Beth Israel Deaconess Medical Center (BIDMC) study suggests….

bcpid817305526001?bckey=AQ~~,AAAAAFqngE4~,1T5CVJLflDgH5Vlf5BfgldQPJ39fiMEk&bctid=1318343417001

While many of the more than 100 primary care doctors who volunteered to participate in this experiment predicted possible health benefits from allowing patients to read their notes, the majority of those who declined participation were doubtful about positive impacts. And among the 173 doctors completing surveys, the majority expressed concerns about confusing or worrying patients with the content. Doctors also anticipated that they would write their notes less candidly and that responding to patient questions might be exceedingly time-consuming.

In contrast to the doctors surveyed, the nearly 38,000 patients who completed the baseline survey were almost uniformly optimistic about OpenNotes, and few anticipated being confused or worried

“The enthusiasm of patients exceeded our expectations,” wrote Walker. “Most of them were overwhelmingly positive about the prospect of reading visit notes, regardless of demographic or health characteristics.”

More than 90 percent favored making the notes available. Well over half anticipated improved adherence to their medications, 90 percent expected to feel more in control of their care, and four out of five predicted they would take better care of themselves….

Read the entire news article

Related articles

• Doctors are cautious, patients enthusiastic about sharing medical notes (eurekalert.org)
• Patients eager to see doctor’s notes; physicians, not so much (seattletimes.nwsource.com)
• Patients Want to See What Doctors Write about Them, Says Survey (onehealthyblog.wordpress.com)
• Patients, Docs Differ on Online Notes (abcnews.go.com)
• Patients Want Electronic Link To Doctor’s Notes (informationweek.com)
• How much guidance do patients want with their medical decisions? (jflahiff.wordpress.com)

Participatory healthcare: A parody? « ScienceRoll

Participatory healthcare: A parody? « ScienceRoll.

A 1 1/2 minute cartoon where a nurse slowly convinces a doctor on why the Internet is useful in patient education.

 

A disconnect between medical resources and health care delivery

Image via Wikipedia

by MAGGIE KOZEL, MD at KevinMD.com (November 27, 2011)

Imagine what health care in the United States could look like if we devised a system that was based on sound medical practice and proven cost effectiveness.  What if we put our brains, energies and passion behind designing the smartest health care system possible?

That was the question that kept poking through my train of thought as I read a study that appeared in the most recent issue of Pediatrics, the official journal of the American Academy of Pediatrics.  Thestudy, out of UCLA, examined the association between length of well-child visits and quality of the visits, including things like developmental screening and anticipatory guidance.  No big surprise that the longer the duration of the well child visit, the greater the likelihood that the content of the visit was aligned with recommended practice guidelines from the AAP.  The discouraging news however is that one third of visits were reported as being less than 10 minutes in duration; these occurred to a greater degree in private practice.  Longer visits of 20 minutes or more made up 20% of the encounters, and were more likely to occur in community health centers.

 

The big winners in the pinch for time?  Guidance on immunizations and breastfeeding were offered in 80% of even the shortest visits.  The biggest loser: developmental assessments, which don’t even achieve a mediocre occurrence of 70% until we pass the 20-minute mark for visit duration….

…

Our fee for service approach to health care dictates that procedures and tests pay well while addressing a child’s emotional problem gets a doctor little more than a backed up waiting room.   From the patient’s view, underinsured children have to rely too much on emergency rooms, while insured parents can only get basic child rearing advice from someone with a medical degree. Health insurance companies and the pharmaceutical industry shape medical practice – and our collective health – through their reimbursement policies, marketing and aggressive lobbying.  So 25% of US children are on chronic medications, while half the children in pediatric practice are not receiving basic screening and advice. The obsolete business models that the health care industries rely on are like the tyrannosaurus-rex in the room, emphasizing expensive, short term quantity rather than cost-effective long term quality, while cognitive care – a high level of skill and expertise delivered face to face in a personal manner – is what is becoming extinct.

Related articles

• Maggie Kozel, M.D.: Modern Pediatrics Needs Health Care to Evolve (huffingtonpost.com)
• Why can’t the United States have a smarter health care system? (kevinmd.com)
• The culture of medicine needs to change (jflahiff.wordpress.com)
• Four Major Flaws in Our Healthcare System (triplepundit.com)
• CareSource Teams Up with the Ohio Chapter, American Academy of Pediatrics to Support Asthma Pilot Project (prweb.com)

Government agency working to empower patients and others to improve health care quality

The US Agency for Healthcare Research and Quality is working to empower us through an ad campaign and online materials.

The ad campaign Questions are the Answers includes public service announcements (the videos may  be viewed here)

The Questions are the Answers campaign also features these Web pages

• Reducing Medical Mistakes with questions to ask your health care provider, how to prevent medical errors, and more
• Talking with Your Clinician with tips on how to give and get information, get quality care and more
• Planning for Surgery with questions to ask and tips
• Getting a Prescription with tips on keeping track of meds, how to take medicine safely, and more
• Links to Additional Patient Safety Resources

Related articles

• Your Health Priorities Tool (AHRQ) (jflahiff.wordpress.com)
• I’m happy that patients use the internet  (ScienceRoll)
• IOM Report: Government Should Consider Public Health Implications Of All Major Legislation (jflahiff.wordpress.com)
• Question Authority (centerforhealthmediapolicy.com)

Simple guidelines decreased unnecessary antibiotic use in Quebec, Canada

 

 

 

 

 

From the 26 July 2011 Eureka Alert

Antibiotic overuse and resistance have emerged as major threats during the past two decades. Following an outbreak of Clostridium difficile infections, which often result from antibiotic use, health care professionals in Quebec, Canada targeted physicians and pharmacists with an education campaign that reduced outpatient antibiotic use, according to a study published in Clinical Infectious Diseases and now available online.

The Quebec Minister of Health and the Quebec Medication Council collaborated with designated physicians and pharmacists to develop guidelines to improve prescribing practices. First issued in January 2005, the guidelines emphasized proper antibiotic use, including not prescribing antibiotics when viral infections were suspected and selecting the shortest possible duration of treatment. Approximately 30,000 printed copies of the original recommendations were distributed to all physicians and pharmacists in Quebec. An additional 193,500 copies were downloaded from the Medication Council’s website.

(The current versions of the guidelines are available online: http://www.cdm.gouv.qc.ca/site/aid=166.phtml.)

During the year after the guidelines were initially distributed, the number of outpatient antibiotic prescriptions in Quebec decreased 4.2 percent. In other Canadian provinces, the number of these prescriptions increased 6.5 percent during the same period.

According to study author Karl Weiss, MD, of the University of Montreal, “It is possible to decrease antibiotic consumption when physicians, pharmacists, state governments, etc., are working together for a common goal. This is the key to success: having everybody involved and speaking with a common voice.”

Dr. Weiss added, “Simple, short, easy-to-use guidelines have an impact on physicians when they are readily available. The web is an increasingly important tool to reach our audience and should now be used as such in the future. With handheld electronic devices available for all health care professionals, these downloadable guidelines can be accessed and used at any time and any circumstance.”

Related articles

• Superbug gonorrhoea found in Japan (newscientist.com)
• Drug-resistant STD prompts global warning (independent.co.uk)
• (Reuters) – Scientists have found a “superbug” strain of gonorrhea in Japan that is resistant to all recommended antibiotics and say it could transform a once easily treatable infection into a global public health threat. (theboldcorsicanflame.wordpress.com)

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

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 

Article Outlines Principles For A Conservative Approach To Prescribing Medication

Image via Wikipedia

From the 14 June 2011 Medical News Today article

 

 shift toward more conservative medication-prescribing practices would serve patients better, according to a review article published Online First today by Archives of Internal Medicine, one of the JAMA/Archives journals***. The article is part of the journal’s Less Is More series.

As background, the article notes that the majority of patients under age 65 years receive at least one prescription drug annually. However, according to the authors, not every patient visit needs to result in a prescription. They point to “the recent spate of revelations of undisclosed and unexpected adverse effects of drugs in multiple therapeutic categories” as just one reason to take a more measured approach to medication usage…

…Among the steps they recommend for conservative prescribing:

• Think beyond drugs. Would other interventions help? Would a medication simply mask symptoms without treating the problem? Can a condition be prevented instead of treated? Would waiting to see if the symptoms self-resolve be wise?
• Practice more strategic prescribing. Do you have a solid understanding of medication choices? Is there a valid reason to switch to a new drug? Is it the right drug for your patient? Can you avoid using multiple medications?
• Maintain heightened vigilance regarding adverse effects. Do you check with patients about potential drug reactions? Do you teach them the warning signs? Are the drugs you’re choosing prone to withdrawal symptoms or relapse?
• Approach new drugs and new indications cautiously and skeptically. Where do you get your information about new treatments? Can you wait until a new drug has had a longer track record? Does the drug actually help resolve the core problem? Is it actually indicated for this problem? Does it deliver what it promises? Do studies tell the whole story on a drug?
• Work with patients for a more deliberative shared agenda. Can you persuade patients not to demand drugs they have seen or heard advertised? Is a patient’s noncompliance with therapy the source of the problem? Has the patient already tried this drug without success? Can you encourage healthy skepticism in your patients?
• Consider longer-term, broader effects. Would a different therapy be less likely to cause future harm? Can you find a way to make the prescribing system better?

***For suggestions on how to get this article for free or at low cost, click here

Validate Complaint Before Responding

From the 19 May 2011 Medical News Today article

…Listening, saying sorry, and validating the complaint by repeating the complaint word for word – or least paraphrasing – can solve the majority of the problems and diminish the need for fights. Sometimes people just want to be heard…hear their complaints and gripes about life validated. Doesn’t mean necessarily you’re wrong and they’re right….they just need to blow off steam. Also, for some people after hearing their complaint repeated back it makes them realize they’re making a mountain out of a mole hill….they’re being unfair, unreasonable, and even silly. ….

..Source: Sorry Works! (“advocacy organization for disclosure, apology (when appropriate), and upfront compensation (when necessary) after adverse medical events.”)

Click here to read the entire Medical News Today article

Related articles

• 10 steps to a successful complaint (telegraph.co.uk)

Rising reports of bad reactions to drugs

http://www.fda.gov

Rising reports of bad reactions to drugs

From the March 28 2011 Health Day news item   By Alison McCook

NEW YORK (Reuters Health) – Official reports of negative reactions to prescription drugs have increased dramatically over the last decade, according to a new study.

In a U.S. Food and Drug Administration (FDA) database launched in 1969, researchers found that over half the reports of “adverse events” suspected to be caused by a particular drug or device date from just the past 10 years.

The FDA currently receives about half-a-million such reports of health problems, and even deaths, associated with medical products each year. In 2000, they came in at a rate of nearly five for every 10,000 office visits in which at least one prescription was written. By 2005, that rate had risen to nearly seven per 10,000 visits, according to the new analysis published in the Archives of Internal Medicine.

Between 2000 and 2010, the number of reports coming in grew steadily by more than 11 percent every year. By 2010, they added up to 2.2 million reports — 55 percent of the entire database total.

Study author Dr. Sheila Weiss-Smith of the University of Maryland in Baltimore cautioned that the number of reports does not equal the true number of negative reactions to drugs.

Manufacturers are required to report to the FDA any health problem they suspect stems from one of their products, but for doctors, patients, lawyers, and anyone else who reports these reactions, it’s entirely voluntary, she told Reuters Health.

It’s hard to estimate how many negative reactions to drugs actually occur, Weiss-Smith noted. Some experts suggest official reports represent one-tenth of the number of actual negative reactions, but she said she doesn’t trust that figure. “We just don’t know. We don’t know what percentage of events actually gets reported.”…
…More people are taking drugs, and for longer times, which increases the potential for bad reactions, and negative interactions between drugs, she said….

…Negative reactions can occur from a variety of drugs, and patients need to take steps to protect themselves, Weiss-Smith urged. “Drugs are chemicals. And you’re putting something in your body. You need to know what it is.” [Editor Flahiff's emphasis]She recommended that everyone tell their doctors what they are taking, and try to go to one pharmacy, “so someone can keep track of all the different things,” preventing negative interactions.

If you keep adding drugs to your daily routine, talk to your doctor about whether you can cut back on others, so that you are only taking the minimum necessary amount, she said. Read all the material that comes with medicines, and tell someone immediately if you start to feel unwell. “If something doesn’t feel right, talk to your doctor, talk to your pharmacist.” [Flahiff's emphasis]

Are you looking for information about a drug? to use for consultations with your health care provider?
Please use reputable resources that strive to provide unbiased information.
Pharmacists are great sources of information. Practicing pharmacists are college graduates (many with Master’s degrees) that are state licensed. Many give free information at their place of business, they seldom ask if you are one of their customers!!

Also, don’t forget librarians as your personal, professional guides to information in print and online resources.
Contact your local public, academic, or medical library. Many medical and academic libraries, especially those state funded, give at least some assistance to the public. Call ahead. You may be pleasantly surprised!

And, as always, contact me( jmflahiff who virtually resides at yahoo.com)

Some examples of good drug information Web sites

Drugs, Supplements, and Herbal Information (from a MedlinePlus page)

Prescription and over-the-counter medication information contains answers to many general questions including topics as what a drug is used for, precautions, side effects, dietary instructions, and overdoses. From the American Society of Health System Pharmacists

Herb and supplement information includes information on uses based on scientific evidence as well as safety and potential interactions with drugs, herbs, and supplements. From Natural Standard, an independent group of researchers and clinicians.

Drugs and Supplements (sponsored by the Mayo Clinic)

Somewhat lengthy drug and over-the-counter medicationinformation with these sections: description, before using, proper use, precautions and side effects. From Micromedex, a trusted source of healthcare information for health professionals. 

Herb and supplement information includes information on uses based on scientific evidence as well as safety and potential interactions with drugs, herbs, and supplements. From Natural Standard, an independent group of researchers and clinicians.

Drug Information Portal

A good central source of drug information by the US government (the National Institutes of Health). It links you to information on over 12,000 drugs from trusted consumer drug information sources, the US Food and Drug Information, and LactMed (summary of effects on breastfeeding), It also gives any summaries from medical and toxicological articles (however, some whole articles may not be for free on the Internet).

Related Articles

• Online Medical Advice Can Be a Prescription for Fear (jflahiff.wordpress.com)
• Drug Information Product DailyMed Mobile Version Launched (jflahiff.wordpress.com)
• Fewer fill “dispense as written” prescriptions – study (reuters.com)
• What’s In OTC Painkillers? Most Americans Don’t Know
• Study shows pharmacies’ software systems miss potentially dangerous interactions (Eureka alert, May 2011)