Notes & Links: August 27, 2013

In Coming Decades, Fewer Caregivers
Judith Graham writing in NY Times Health responds to an AARP Public Policy Report suggesting the pool of caregivers will be greatly diminished starting in 2026. The report points out that the shortage will be for both non-paid (family friends) and paid. 

Graham pulls data from the AARP report. In 2010 there were 7.2 people within the prime caregiving age 45 to 64 for every person 80 or older. By 2030 that number will drop to 4.1 and further drop to 2.9 by 2050. We all know the aging population is growing each year and living longer. Just consider that in 2010 greater than half of adults age 80+ had a severe disability while 30% needed assistance with bathing, toilet, dressing, cooking, eating, bill paying, etc. There are 11 million adults 80+ in 2010 with an expected 82 million in 2030 and 99 million in 2050. Graham requested this data from AARP. 

“What these numbers tell us is that relying on family and friends to provide long-term care may be unrealistic in the future,” said Lynn Feinberg, a senior strategic policy adviser at AARP. “We need to be thinking about new approaches to financing and delivering long-term services and supports, particularly home and community-based services, which are what most people want.”

Graham points out limitations to the AARP report 

There are limitations to the AARP study. For instance, it doesn’t say how many people are entering older age living alone, without family or friends nearby. The numbers here paint a big picture of a big problem, but details that might flesh out who is particularly vulnerable are lacking. Asked what solutions AARP recommends, Ms. Feinberg discussed a need for “better supports for family caregivers” but didn’t endorse specific suggestions.

I have been a caregiver for my wife. I was a caregiver for over 2.5 years and have written about it (here). I believe caregiving is essential and important to both the patient and the caregiver. It is a gift we give and get but it is hard and emotionally debilitating. It robs us of our life but gives us life and as CS Lewis points out every married couple will find one partner grieving and that generally follows an illness and caregiving. Caregiving needs to be recognized and given it’s place within our changing healthcare system. 

Cancer’s Ordered Disorder
Abigail Zuger, MD writing in the NY Times reviews a new book The Cancer Chronicles: Unlocking Medicine’s Deepest Mystery by George Johnson a writer for the Science Times. The book chronicles Johnson’s wife’s diagnosis’s with cancer and his desire to learn as much as possible. What Zuger offers us in her review is a what appears to be a terrific book that captures a reality of this horrific disease. 

But perhaps not since Susan Sontag has anyone put cancer so firmly and eloquently in its place as Mr. Johnson does, casting it as neither metaphor nor enemy, but simply a natural part of the orderly disorder of the natural world.

The review is insightful but more importantly the book puts cancer into a real world framework “Poop happens”. 

A Method for the Design and Development of Medical or Health care Information Websites to Optimize Search Engine Page Rankings on Google
Dunne, Cummins, et. al. out of University of Limerick (I didn’t know there was a University there) published this paper in JMIR. Again the authors of this study as others I have reviewed recognize the fact the Internet is the single most important source of knowledge for patients. And no longer are we talking about patients who are socioeconomically entitled or positioned. More and more people are turning to the Internet to manage their healthcare and learn. 

The objective of this paper was to provide a method for the planning of information to be included in medical information websites and for representing that information in a readable manner. As Search Engine Optimization (SEO) can be a critical factor in ensuring top-ranking search engine results and given that the cost of using potentially expensive online advertising or SEO professionals in order to promote a website may be prohibitive for government or advocacy groups wishing to impart good quality medical/health care information, use of the tools and techniques described in this paper will not only ensure the quality of the information in the website but may also provide the website with an improved chance of being returned to a searcher in a higher ranking on a Google SERP, without incurring significant additional cost.

You can’t argue with that logic, better and cheaper. Makes sense to me but can they do it?

It looks like they did with a Website Quality Assessment (WQA) tool using yes/no questions to assign a score for each Website. The criteria use were

  1. Is there a listing of the questions likely to be asked by the searcher?
  2. What myths or misinformation exist on the topic that may need to be dispelled or corrected?
  3. What information could be required by the searcher in order to assist in making informed decisions?
  4. Are there relevant comparisons or analogies that might help in understanding of the topic by a nonscientist or clinician?
  5. Is there any associated or corollary information from other related topics or areas that might be helpful to support understanding of the topic?

The authors rightly wanted to examine Website readability and note it is very important in healthcare and medicine. They used two methods to assess readability of text, Flesch Reading Ease and Flesch-Kincaid Grade Level. These tools were used to measure the association between websites with WQA scores and readability assessments. This was used to demonstrate the predictive validity of their assessment tools. 

The authors conclude:

Overall, use of the WQA tool in the planning and preparation of material for medical information websites, alongside an assessment of readability of the written material, is likely to ensure that the website subsequently ranks higher in Google SERPs and is thus more likely to be accessed, as well as read and understood, by the intended audience.

The study has some very real limitations including a small number of websites assessed. Additionally another study could examine design and readability which I believe drives usability and accessibility. Additionally the readability formulas do not indicate clarity of information. I didn’t realize not all low syllable words or shorter sentences are easier to read. 

This study and yesterdays “Consumers’Perceptions of Patient-Accessible Electronic Medical Records” point to what I believe is the direction we are moving in healthcare. We are not just relying on pretty shinny technology to drive knowledge but are in fact trying to understand what makes learners want to learn and what do we need to do to get them to learn. Because to achieve change in healthcare we need ensure consumers and HCPs learn and learn effectively and can apply that knowledge to their healthcare needs. 

Insights and Diagnosis
db’s Medical Rants reviews Gary Klein’s book Seeing What Others Don’t: The Remarkable Ways We Gain Insights. But more importantly he looks at this book and what it means for physicians and diagnosis of patients. 

While this formulation makes sense as one reads the book, I have a slightly different “take away” point. Skepticism, a classic science tactic, dominates in making insights. We should not accept prevailing wisdom; we should not automatically believe the labels placed on a patient; we should look for inconsistencies and understand that explaining inconsistencies often takes us to a different conclusion than others have made.

db’s review opened my eyes and I think I will be looking at this topic to see what I can learn to improve my ability to find new knowledge.

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