Health Literacy – Not “Feeling” It?

health-literacy

Bernadette Keefe MD

Health Literacy – It’s still not catching on.

The Center for Disease Control and Prevention (CDC) defines health literacy as

“the degree to which an individual has the capacity to obtain, communicate, process and understand basic health information and services to make appropriate health decisions”.

 As a believer in improved general literacy for citizens, I have assumed that health literacy, achieved through quality health information, having been easily accessed and well understood, would be akin to the process of general literacy. But just as education involves more than the conveyance of information, it is similar for achieving health literacy.

Although considerable efforts have been made regarding the formulation and dissemination of health and self-care information, we are seeing little effect on health outcomes. All parameters of health and wellness in the U.S. remain stubbornly poor, including the high incidence of obesity, type 2 diabetes, heart disease, cancer, mental health, and addiction. Healthcare systems and healthcare professionals continue to tout patient engagement strategies and the importance of health literacy, but as Michael Friedman states in his excellent piece on the topic:

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Falls Prevention Day 2015: Will the real ______________, please stand up!

              National Falls Prevention Awareness Day ~ September 23, 2015

                                        “Take a Stand to Prevent Falls” 
fallPrevention

 Bernadette Keefe MD

 “One of every three older adults falls each year, but less than half talk to their healthcare providers about it.” – Lawrence Z. Rubenstein MD, MPH Chair Geriatrics – U. of Oklahoma Health Sciences Center

 Introduction

Tomorrow, September 23, 2015, the U.S. will celebrate the 8th Annual Falls Prevention Awareness Day. The announcement on the National Council for Aging (NCOA) Falls Prevention Day website reads:

“The 8th annual Falls Prevention Awareness Day (FPAD) will be observed on September 23, 2015 – the first day of fall. The event seeks to raise awareness about how to prevent fall – related injuries among older adults. The 2015 theme is Take A Stand to Prevent Falls and the official twitter hashtag for this year’s event is #FPAD15 Continue reading

Uncertainty: Can We Take It? (& Avoid Over-Diagnosis/Over-Treatment)

 

embracing-uncertainty-mindmap

Bernadette Keefe MD

“Man lives in a world of surmise, of mystery, of uncertainties.” – John Dewey

The practice of medicine is both an art and a science, filled with uncertainty. Seemingly overnight, a tremendous amount of uncertainty has entered the healthcare arena, even apart from the financial /insurance, regulation/government and technological/electronic record issues. This uncertainty is starkly apparent at the point of care, when people seek professional advice from physicians. There are three major facets of uncertainty during consultation:

  1. The ongoing changing relationship between patients and physicians
  2. The uncertainty of the information within and significance of medical test results
  3. The uncertainly about the veracity of the vast body of medical research

The Changing Physician/Patient Relationship, and Complications Within It

As physicians we are expected to:

  1. Listen to our patients more attentively;
  2. Provide them with as much data about their disease as possible;
  3. Recommend further reading on their conditions; and
  4. To be much more mindful of the patientʼs goals and to consider the social context when recommending treatments.

As Patients we are expected to:

  1. Be interested and engaged in shared decision making about our course of care and treatments.
  2. Take better care of ourselves, to exercise, eat nutritionally, to get enough sleep, to not smoke, to avoid addictions and to maintain a healthy social life .

Implicit in this is that both physicians and patients would have access to the necessary patient data to enable safe, informed care. Sadly in this era of little to no interoperability, the results of outside testing and consultation are often not available at point of care.

The Quest for Certainty Thru More Testing 

Humans fear uncertainty, tending to do anything to resolve questions and reduce risk. In healthcare that usually means more tests and diagnostic procedures to answer nagging questions. Both physicians and patients fear uncertainty. 

From A Surgeon:

The noted author/surgeon; Atul Gawande MD addressed this subject in his New Yorker article “Overkill”:

“As a doctor, I am far more concerned about doing too little than doing too much. Itʼs the scan, the test, the operation that I should have done that sticks to me – sometimes for years.

Why not take a look and see if anything is abnormal?

And patients often feel the same way. Theyʼre likely to be grateful for the extra test done in the name of “being thorough…”

but

“Resolving the uncertainty of non-normal results can lead to procedures that have costs (and complications) of their own”.

From An Emergency Medicine Physician:

A recent survey of emergency department physicians, focusing on imaging tests, revealed that over 90% of them ordered unnecessary tests out of fear of error, uncertainty, and other non-medical reasons. Hamal Kanzaria M.D the lead author commented about the results:

“Overall I interpret our results (as reflecting on) a cultural response both within and outside medicine to uncertainty and error.

I personally think that to overcome overtesting we need to address our collective intolerance of uncertainty both within medicine and within society at large, as well as the culture of blame that triggers the malpractice system.”

From A Radiologist:

In his piece, “Who is the better radiologist? Hint: itʼs not easy”, Dr Saurabh Jha, a radiologist, asks us to think about the trade offs between certainty and risk, between sensitivity or specificity with respect to interpretation of radiologic studies. Given perfection is unattainable, do we lean towards the underdiagnosis or overdiagnosis spectrum?

As Dr Jha states in his piece (he uses a fictional Dr Jha and Dr Singh for purposes of illustration (please see the article to put this in context) that we vacillate about what kind of radiologist we would want reading our study depending on the known outcome.

“If I had a missed tiny cancer on chest X-Ray, I would have wanted Dr. Jha to have read my study”

(The fictional Dr. Jha over reads, misses nothing but calls every incidental finding, 99% are nothing but many of these evaluated because of his reading: surgery, complications or worse).

but

“If I had no cancer I would have wanted Dr. Singh to have read my Xray.”

(The fictional Dr Singh only calls major findings, not mentioning small findings he interprets to be incidental findings, thus avoiding needless work up, possible complications and waste.)

However, we do not know the outcome of a study ahead of time so each of us, as patients and physicians must decide in each circumstance what level of uncertainty is tolerable for us. Are we going to try to quell every tinge of uncertainty no matter the cost to ourselves (and others)? Or can we tolerate living with some uncertainty, living with those non-normal findings that we do not investigate.

environmental uncertainty

 

 

 

 

 

 

 

 

Uncertainty of Truth of Published Research

With more transparency and unbiased evaluation of the literature, we are learning that there is a tremendous amount of uncertainty about the body of research which had been considered evidence based, but now is often seen to be unreproducible. For instance a treatment course entered into now may be found unhelpful or even dangerous a year or worse – 10 years from now. As George Lundberg MD just wrote in Medscape about the work of John Ioannidis on the inaccuracy of most of the body of medical literature:

“The mathematics, the psychology, and a misunderstanding or deliberate ignoring of the overriding importance of positive predictive values negate the validity of most – and he means most – published research.

John (Ioannidis) argues persuasively that many forms of bias operate in affected domains, fields, cultures, peopleʼs heads, reward systems and ecologic groups.”

In the article, Dr Lundberg lists 12 steps to improve the body of medical research including:

  • adopting a culture of replication
  • more collaboration and transparency
  • better training and standards
  • improvement in peer review
  • improvement in reporting and dissemination of research results
  • I would add to them: open access and patient inclusion in study design.

Below is an excerpt from a blog post by Dr John Mandrola, cardiologist, citing a recent article in the journal Mayo Clinic Proceedings about the dramatic number and subsequent effect of medical reversals. (Medical reversals are advice and treatments, including drugs, procedures, surgery which were formerly recommended, that are now shown to be useless or harmful.)

“The authors emphasize three reasons why medical reversals are so serious. First millions of humans were harmed. The second issue is continuing harm. Some estimates suggest it takes ten years – on average – to change entrenched medical practice…Third, medical reversals cause harm because they erode trust in the patient – doctor relationship. Patients expect doctors to be either correct, or transparent about uncertainty.”

and

“This is not just important information for doctors. Patients seeking medical treatment should not assume a prescribed therapy is beneficial just because a doctor says it is. The era of paternalism in Medicine is over. Patients should be able to ask their doctor whether the evidence supports the intervention. Itʼs okay if the doctor is uncertain. In fact, doctors who are too sure of things worry me.”

Conclusion

So now what?

Just at a time when patients are becoming empowered, shared decision making has becoming a reality, and physicians are listening more, we realize that much of the literature (ever increasing and replete with reversals) is partially or almost completely in error. Just at the time we need, more than ever, real time access to patient data, we have instead, widespread lack of interoperability.

The confluence of scared but empowered patients, a flawed body of medical literature , a new paradigm of shared decision making, unworkable information technology, an endless supply of “sexy” new technologies, a hangover from a culture of medical paternalism and overwhelmed physicians necessitates an urgent need for a “time out”.

A time out invites both physicians and patients, to reflect on the centrality of uncertainty in life, to resurrect compassion for and listen more attentively to one another, and, to embrace humility regarding the human condition.

 

uncertainty qote

BK

Addendum: I am currently Storifying the 2016 #EvidenceLive conference, from June 21-24, Oxford, England. This important conference is relevant to this post.

My #EvidenceLive Storifys thus far:

June 21: Pre-conference workshops

https://storify.com/nxtstop1/the-evidencelive-conf-via-evidencelive-oxford-eng-

June 22 Day 1 Part 1

https://storify.com/nxtstop1/the-evidencelive-conf-via-evidencelive-oxford-eng–576a49d3496bcc774b68e3da

June 22 Day 1 Part 2

https://storify.com/nxtstop1/the-evidencelive-conf-oxford-june-22-24-2016-curat

 

With thanks:

Header Image Credit: Adam Sicinski

http://www.mindmapart.com/embracing-uncertainty/

References

“Risks, Benefits and Uncertainty in Health Care”, Health Affairs, May/June 2007, http://content.healthaffairs.org/content/26/3/624.full.pdf+html, accessed May 16 2015

“Coping with Uncertainty in Primary Care”, Dr Richard Draper, PatientPlus, April 2010,http://www.patient.co.uk/print/1541, accessed May 16 2015

“Varieties of Uncertainty in Healthcare: a conceptual taxonomy”, Paul K J Han, William M P Klein, Neeraj K Arora, Medical Decision Making, December 2011,http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146626/, accessed May 16 2015

“Overkill”, Atul Gawande, New Yorker, May 11 2015,http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande, accessed May 16 2015

“Changing the culture of American Medicine – Start by removing hubris”, Dr John Mandrola, Dr. John M Blog, July 8 2013, http://www.drjohnm.org/2013/07/changing-the-culture-of-american-medicine-start-by-removing-hubris/, accessed May 16 2015

“Who Is The Better Radiologist: Hint, it’s Not That Easy”, Saurabh Jha, Kevinmd.com, August 9 2014,http://www.kevinmd.com/blog/2014/08/better-radiologist-hint-easy.html, accessed May 16 2015

“97% of ED Physicians Order Unnecessary Tests”, John Commins, HealthLeaders Media, March 30 2015, http://www.healthleadersmedia.com/content/PHY-314799/97-of-ED-Physicians-Order-Unnecessary-Imaging-Tests, accessed May 16 2015

“Clinical Decision Support: The elixir of Healthcare?”, Nathan Buzza, LinkedIn Pulse, March 8 2015,https://www.linkedin.com/pulse/clinical-decision-support-elixir-healthcare-nathan-buzza, accessed May 16 2015

“The Certainty of Uncertainty in Medicine”, Dr Lundberg, Medscape, May 2015,http://www.medscape.com/viewarticle/844488, accessed May 16 2015 (subscription requied)

“Why Most Published Research Findings Are False”, John P A Ioannidis, August 2005,http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/, accessed May 16 2015

The Case For Teaching Ignorance http://www.nytimes.com/2015/08/24/opinion/the-case-for-teaching-ignorance.html

Image Credit: Dr. Seuss sign made by eureka

FYI Topics for the #hcldr tweet chat on Tuesday May 19, 2015 were:

  • T1 Ask your physician to investigate everything or live with non-normal findings that are most likely benign: Where do you fall on the continuum?
  • T2 Which radiologist would you prefer: attention to every little finding/order every test OR just big stuff/order a few tests maybe miss small things?
  • T3 When there is uncertainty about best course of treatment or diagnostic testing, are you more or less apt to just let “doc decide”?
  • T4 What are the best solutions to all this uncertainty? Interoperability? Better research? Less litigation? Less blame? Accountability? Facing the reality of the human condition? More humility for all?

 

a matter of trust

overcoming-writers-block-crumpled-paper-on-wooden-floor-photosteve101

Bernadette Keefe MD

Breaking someone’s trust is like crumpling up a piece of paper. You can smooth it over but it’s never going to be the same again ~ anonymous

There is perhaps no more central concept to human communication and relationships than trust: “belief that someone or something is reliable,good,honest,effective”. This holds true for our professional (business-ie financial, insurance, governmental, healthcare etc) as well as our personal interactions. Once established, trust allows unbridled, open and honest discussion and limitless learning. A trusting environment fosters personal growth, self esteem and generosity. Trust allows the deepest love humans can have. Trust leads to peace.

The absence of trust breeds the opposite of the above. Deep and open relationships are not possible. Communication breaks down on all levels and realms. Unfortunately, overtime we have experienced a breakdown of trust between the people and much of society’s organizational structure: business, government, academia, scientific and healthcare communities. Physicians as messengers are swept up in this tide of mistrust. If the messengers/teachers/researchers of science, education and medicine are not trusted their messages,no matter how factual, will not be accepted and advice will not be adhered to. Gone, happily, are the days of “blind trust”, but, the atmosphere of “no trust” is equally untenable.

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slow medicine – not can we afford it, but how can we not?

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The_Doctor_Luke_FildesBernadette Keefe MD

The Unease

Over the past few decades there has been an increasing disquiet among doctors and patients. Prior to the late 1970s (pre CT/MRI era) other than basic blood work and plain xrays, there was little in the way of testing for disease. However physicians were well equipped with a robust heritage of  patient bedside history-taking and examination skills. Adept physicians in elucidating a pertinent historical record and performing patient examinations were brilliant diagnosticians. Lavishly written patient narratives and exquisite physical examinations filled voluminous charts.

The late 1970s ushered in organized medicine, HMOs, regulations and abundant technological and medical advances. This potent combination resulted in a tremendous escalation in the volume and pace of healthcare. Physicians, once loved for their bedside manner and comfort (1950’s-1960’s) found, from 1980s-present that they were so rushed and burnt out they had little empathy to spare. Patients picked up on this and, coupled with little time to ask questions and (now) electronic medical records consuming their doctor’s attention, stopped feeling cared for. They stifled their questions and stopped buying into the therapies being proposed for them. (Note: Perceived lack of empathy has been shown to adversely affect clinical outcomes.)

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