Category: Blog

Let me drift away from healthcare, patient engagement, end of life, and the other topics I embrace. I want to take a moment and reflect on caregiving. Not caregiving as in healthcare but in the care you are given once you buy an app or any product for that matter. The product is only one piece of a brands’ gestalt. 

A few years back I became acutely aware my password management was a mess. I was using the same word on multi sites or forgetting what I used to set it up and worse using simple words. At the time I was looking for something to fix my password cluster mess. I heard on a podcast (advertising) about 1 Password. I bought it. It was a paid app. Using my mantra I sought a solution to a problem I had. 

1 Password worked and over nearly four years has served me well and made my password issues a thing of the past. Over this period the folks at Agliebits answered questions, solved problems, and even refunded me money when I purchase the wrong product. All expected and appreciated.

Recently I upgraded to Mavericks as well as updating my apps to take advantage of the new OS. 1Password was upgraded. It worked fine but there were some syncing issues based on my error way back. The crew at Agliebits support spent a week patiently trouble shooting it with me. Their emails were clear and supportive. I had a problem they accepted it and not once made me feel like an idiot. (Hold your tongue.) It was fixed and I thanked them. The tech person helping me asked me to review the product on iTunes etc. I declined since I see those reviews as half shills hocking a product or people complaining.

I have no problem with being asked to review. It’s not an automated request you get with free apps it was an employee to a customer with sincere respect. And that is what is key. When you buy an app or product you expect it to work and we forget that behind a product is a corporate culture. I may be pollyanna today but with the products I buy I expect respect and support. This is nothing that doesn’t happen a 1,000 times a day with all levels of products, services, markets, etc. But when it happens, which is infrequently, it reminds us of what my mother said “You get what you pay for.” I paid to have a product solve a problem. I got that as well as people to help solve problems during the life of the product. I have the stupidest, most complex and over 500 passwords hopefully safe (thank you Target). And with those passwords I have a team. Nice change from trying to call Dell wouldn’t you agree.

And now back to healthcare. This real world example should occur in healthcare and patient engagement with the HCP. It does to a point we get a Rx and care but can patient engagement become HCP@support.com?

 

Austin Frakt writing at The Incidental Economist points out a small difference of opinion between the Federation of American Hospitals and a comprehensive literature review. It seems the industry organization sees consolidation as wonderful and offering a wide range of benefits to consumers and communities. While academics reviewing the literature see it a bit differently.

• Consolidation drives higher prices
• Physician-hosital consolidation has not improved quality or reduced costs.
• Consolidation is done to improve bargaining power and leverage over payers.

Not surprising at all.

Addendum: The New York Times has a piece “Hospital Chain Said to Scheme to Inflate Bills”

The lawsuits describe a wide-ranging strategy that is said to have relied on a mix of sophisticated software systems, financial incentives and threats in an attempt to inflate the company’s payments from Medicare and Medicaid by admitting patients like an infant whose temperature was a normal 98.7 degrees for a “fever.”

Someone needs a PR firm to show this is a benefit to patients and community.

Leah Binder a Contributor at Forbes shares her deep dive into the most recent CMS actuaries report “5 Hollywood Moments in The Latest US Health Care Spending Numbers”. She unfolds the data and finds some surprising bits and pieces. 

The overview: 
From 2009 to 2012 healthcare spending in the US grew at its slowest rate since the 1960’s. In 2012 spending stabilized by growing at 3.7% and accounted for a smaller percent of GDP 17.2% in 2012 vs. 17.3% in 2011

• The actuaries from CMS attributed this stabilization in cost was due to economic recovery
• The growth of high deductible health plans were a stabilizing factor with deductibles being as high as $1,000 which covers 1 in 5 workers.
• Health plan administrative fees are down and the growth pharma costs grew surprisingly little. At the same time hospital services grew 4.9% and physician services grew 4.6%. (Binder wonders out loud if these two groups are doing more services: volume over costs)
• States are being hit with increased Medicaid spending
• The single biggest payer of US healthcare spending are you and I. Spending by you and I account for 28% of the $2.3 trillion healthcare sector.

This is straight from the horses mouth and though it is a snapshot i may point to some positive tends as well the negative ones. Where will next few years data point?

JMIR has a new original paper “Engaging With a Wiki Related to Knowledge Translation: A Survey of WhatisKT Wiki Users” from Mathew, McKibbon, Lokker, Colquhoun out of McMaster University and Ottawa Hospital. In 2008 WhatisKT (What is Knowledge Translation) wiki was launched. It was a collaborative platform for knowledge translation. What is KT you ask? On their wiki they have 22 definitions. Here is one which covers it well.

Knowledge translation is a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve the health of Canadians, provide more effective health services and products and strengthen the health care system. (2008 definition)

The authors stated the objective for their study, “gain an understanding of the perceived value of the website, reasons for not engaging in the wiki, and suggestions to facilitate collaboration and improve the usability of the wiki.” I guess if you build it they won’t come. Well that’s not true, since 2008 they’ve logged in 73,000 unique visitors. But not many contributors.

My interest in this first what a great site to find definitions and information regarding KT. Just a quick tooling around I found this definition for Knowledge Diffusion

“Vast amounts of high-quality knowledge are worthless without effective mechanisms of transmission. Humans are social animals and knowledge, which they create, is transferred through the social interactions of people. This transfer, called Knowledge Diffusion allows for the communication of ideas.”

Sums up what is happen in SM and healthcare while pointing out what need to do, improve social interactions between HCP and patients on health knowledge. This site is a place to spend a couple of hours looking and learning. 

Take a look at the site here and dive into the your own knowledge diffusion. 

Keller, Labrique, Jain, et. al have an original paper “Mind the Gap: Social Media Engagement by Public Health Researchers” in JMIR. They set out to evaluate how extensively social media is used in the public health sector. Their online survey in 2011 of social media beliefs and practices at John Hopkins School of Public Health was the first of its kind.

Our results suggest that despite a substantial appreciation for the potential of social media to serve as a component of public health strategy, only a small minority of public health faculty are actually engaged in this space professionally.

Well there you go what the authors discovered matches what we see online in chats, Twitter, FB, etc. the same faces and voices speaking into an echo chamber. Yet we have a huge community of patients who are searching, speaking, sharing, and more online to improve their healthcare. The 20% of the public health researchers need to match the behavior of those patients who want to find solutions to problems they want to solve. 

So let’s peek into the mind of those who were surveyed. Below is Wordle diagram on current and desired uses of social media in public health research and practice. 

Yesterday I put up a piece on the debate or kerfuffle regarding Lisa Boncheck Adams and the Kellers. You can read that here. This weeks Lancet has a book review  by John E. Ellershaw. He reviewed “Transforming the Culture of Dying: the Work of the Project on Death in America” by David Clark. The review and the book add an important and clear voice to the entire debate swirling about. And I will add in my opinion support the Kellers message.

Ellershaw identifies the books focus as “changing the culture around dying”. I believe that is happening but the focus on dying seems to fly in the face of

…the long road both mapped and trodden by an initially small minority of the medical, care, academic, philanthropic, and policy community who attempted to bring palliative care to parity with a medical culture driven by the curative ideal. This is not of course to say that the curative ideal is wrong, but it is to challenge whether it should be the only ideal and whether we have the right balance between cure and care.

That is key and critica,l striking a balance between cure and care. Helping individuals and families identify within themselves their goal of cure or care and how they want to achieve it. Read the review. I am going to order the book. Those of us who are seeking to change the culture of dying need this resource in order to drive our message. 

Aaron Carroll, MD, MS and my all time favorite only second to Greg at Digital Tonto deconstructs Wellness Programs based on a review of randomized controlled trials. Carroll points out that Wellness programs are evident in nearly all large employers with 50,000 employees. While at the other end employers with greater then 50 only half offer them. And add to that the fact the ACA expands the use of Wellness programs. Wellness will be very prevelent in corporate America. 

RCT found Wellness programs had no significant impact on HTN, blood sugar, or cholesterol. Another study showed lifestyle programs that identified wight and activity saved little if any money.

Back in 2003 PepsiCo began a Health Living program with data being recently published. This program had two parts, one lifestyle and the other disease management. The way this worked was:

For the lifestyle component, assessments were provided to allow employees and their families to determine if they had risks. Online or telephonic coaching were offered in areas like weight, nutrition, or stress management, fitness, and smoking cessation. The disease management component was available only to employees with 1 of 10 chronic conditions. For 6 to 9 months, employees enrolled in this intervention participated in phone calls with nurses to improve medication adherence and self-care knowledge and abilities.

Here are the results

The overall result, which will please proponents of wellness programs, is that the program reduced health care spending by $30 per member per month, or $360 per year. For every dollar spent, $1.46 was returned in savings. This, of course, sounds great. Who wouldn’t want such a program? But a further analysis showed that things were not so simple. The disease management component accounted for almost all of the savings. Those who participated in that part of the program saw a reduction in health care costs of about $136 a month, or more than $1600 a year. This was driven largely by a 29% decrease in hospital admissions.

In fact, for each dollar spent on disease management, the company saw a return of $3.78. For each dollar spent on lifestyle management, they only saw a return of $0.48. In other words, lifestyle management cost more than they saw in return.

So as Carroll points out disease management works and works well both from a cost and outcome perspective.

Will we see the same type of evidence in the wearable tech sector such as FitBit, no significant impact on outcomes. And further patients with chronic illness consume a huge amount of data online and elsewhere are they doing better at lowering utilization costs since they are part of their own disease management? What Carroll presents here points to the benefits of good, careful, and well planned disease management in conjunction with the patient and a program. 

My trusty newsreader served up “A ePatient Firestorm Provoked by Journalists” by Dan Dunlop over at The Healthcare Marketer. I was honestly not aware of the fire caused by two journalist rubbing words together since breast cancer is not my beat. Though once I dived into Dunlop’s post it became interesting. Well only from what a graphic designer would call the negative space on the page. The space where there is white not type or art. 

If you haven’t been following, Lisa Bonchek Adams has been Twitting (@adamslisa)  and blogging about her battle with Stage IV breast cancer. An op ed piece about Adams and her blogging etc. printed in the NY Times and The Guardian has enflamed the ePatient community. (These fire metaphors are getting me hot under the collar.) 

One is an op-ed piece written Bill Keller in the NY Times and the other by his wife Emma Keller in the Guardian which has been taken down. Reading the Times piece Keller addresses the other aspect of a terminal illness beyond cure: palliative care. Bill wonders out loud if Adams living her cancer on stage and voyeurism of the fight to live. The debate is about freedom of press, the ability to share the most intimate details of one’s disease, the fight to live, etc. It is about sharing information so others can learn and benefit . I am in absolute agreement with all that and more. And in the Atlantic piece by Megan Garber she captures the feeling of the ePatient, don’t follow Adams if you don’t like it and don’t complain about it either. Cool way cool. 

My love affair with say whatever online draws thin with the likes of Jenny McCarthy pushing eCigs and humping the crap about vaccination. Come on, the evidence is clear and both those positions taken by McCarthy are dangerous to others who follow it. What Adams is doing is not dangerous to those with breast cancer. Adams message and life can inspire the patient who wants to live and fight for a cure. But there are a couple of points to consider captured by Dunlop clearly and succinctly:

Adams and her medical team at Memorial Sloan-Kettering have been aggressively treating her cancer; and Adams has been open on social media talking about her journey. Unfortunately, Bill Keller, whose piece appears in the NY Times, seems somehow threatened by her voice, and assumes that her experience and storytelling somehow are an affront to others who choose a less aggressive path (he gives the example of his father-in-law’s death). This is fascinating. Here’s a quote from Bill Keller’s story:

“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.”

What does Keller want? Should Adams go quietly into the night to avoid raising false hope for other cancer patients? And who is Keller to even suggest how anyone should deal with a terminal illness? I applaud Lisa Adams for telling her story brilliantly. For me, that is enough.

As you know those three who’ve read and followed me my wife died of NSCLC. I wrote about her illness and death. I posted a piece “What if We Gave Ribbons for EOL and HPM?” Donna did not run a marathon or climb K2 she lived her life as she wanted to with in the limits of the disease. Yet I wonder if she would be criticized for not trying for a cure when none was there?

A friend who is very active at Death With Dignity #dwdchat wrote me the following in an email:

Dying is an intensely personal process; what’s best for one person won’t be for another. What’s really confusing to me about this particular debate is how one person’s decisions on how to die somehow diminishes another person’s path to death. 

And that is the bottom-line. We know how we want to die and what our beliefs are and most of all how we want to live when faced with death. Fight or flight. That’s personal and important. It is part of our being encoded into our DNA. And any discussion of this; end of life, palliation, cure, etc. helps all of us to shape and formulate our very personal DNA. Yet we know there are many who are not clear on that aspect of life and health and dying. For those not clear or strong enough friends and family may use their opinion to coach and shape how the patient deals with a terminal diagnosis. And in a way they drive the end of life based on their opinions and DNA not the patients. Clearly this is not the case with Adams. She knew what she wants and how to achieve it. Her message resonates with a majority whobelieve in fighting to the end. Yet the other message of palliative care and dying on ones own terms seems to be minimized and obfuscated. Both messages are critical and need to be heard by anyone who needs support for what their DNA on death is telling them. One day I want a ribbon or a race for end of life care. 

The answer to the question above is complex but the authors noted the following “we found that few older adult participants mentioned the credibility of the information that they were viewing”. That’s the money shot for me. 

Luger, Houston, and Suls published an original paper in JMIR “Older Adult Experience of Online Diagnosis: Results From a Scenario-Based Think-Aloud Protocol”. The objective was to identify the processes older adults engage in to diagnose symptoms online and predict the accuracy of the diagnosis.

This is a well designed study of 79 adults greater then 50 years of age. Each received a vignette of symptoms of an illness and were asked to talk aloud about their thoughts and actions while looking for a diagnosis. The authors compared accurate diagnosis to the non-accurate diagnosis.

There conclusions were:

Older adult participants tended to rely on matching strategies to interpret symptoms, but many still utilized existing medical knowledge and previous illness experiences as a guide for diagnosis. Many participants also had difficulty navigating the Internet tools, which suggests an increased need for navigation aids in Web design. Furthermore, participants who were inaccurate in their diagnosis had more difficulty with the Internet tools and confusion with the task than those who were accurate. Future work in this area may want to utilize additional study design such as eye-tracking to further understand the coordination between Web navigation, online symptom information processing, and diagnostic strategies.

We all know the data on-line self diagnosis is the new black with 35% of US adults looking online to self diagnose and learn how to manage their health. And we have seen the data on chronic illness and older individuals they are driving online searching and learning in healthcare and illness. The authors note that older Americans may not have the additional cognitive and perceptual processes necessary to do symptom diagnosis, will the next couple of generations? And if they do will we have a healthcare system that will embrace the ePatient? That is the equation learners on both sides. 

I wonder if the authors will in the future examine how these patients present their acquired data to physicians and how those physicians behave or reacts? This is such a classic learner teacher moment that the physician can ensure these patient becomes a more active and in fact improve outcomes through learning together. Improve how this group learns online and help improve the patient physician engagement dynamic surrounding acquired disease knowledge.

How can adult learning theories aid in better understanding what these patients are doing and how to change or better said improve outcomes from self diagnosis?

Finally, I penned a post on how to move learners along a continuum to knowledge and application. One of the ideas I had was that courses for seniors could be taught at local public libraries. These courses would address how to search, what to trust, how to interpret, and how to use that knowledge with your HCP. We cannot miss this opportunity to seed and manage these fertile old minds. 

I have a jean crush on this Pointer Brand. (You MUST check out the videos of music at the factory). Pointer Brand is a TN company manufacturing American made seriously great jeans heavy duty etc. etc. Worth the visit to see what they have but the videos are precious. 

So Pointer Brand is highlighting something called American Original Blue Jeans – Raw White Oak® Cone Denim® Okay I give up, what is cone denim? I went to find out about Cone Denim. It turns out Cone Denim is a company that has been suppling denim since 1891. The find on this site are two videos. One is video it looks like its from the 40s? Very interesting and a candid look back to another America. The other is a hipster Brooklyn video of their products. Interesting as well. 

Sometimes when you step away from the usual sites and reading you find small gems. I forgot what’s like to just drift around the web discovering.