Patient Engagement: The Tipping Point of Change

Linkedin has a discussion on patient engagement (HERE) based on a Forbes article titled “Blockbuster Drug or Snake Oil?“. 

Paul Van Hoesen commented. His primary message being, evidence based medicine and coordinated care would likely deliver better outcomes. He also addressed Patient Engagement and how especially with surgical patients their engagement experiences were telling. He ends his comment with the following:

“In the meantime we have a generation of patients waiting for someone to take the time to tell, take the time to listen, take the time to engage.”

This struck a resonant chord with me. I am reading Ken Robinson’s The Element How Your Passion Changes Everything. The book is a series of stories about how people discovered their element or the zone for what drives them and gives them the motivation and energy to achieve. He calls it passion (personally it is an overused term). But my point is that I see a parallel between this book and Paul’s comment. 

Using Google’s ngram viewer and entering “patient engagement” between 2001 to 2008 the term was found .00000024% in 2001 and .0000006% in 2008. Albeit this is a very small number but consider ngram searches a “corpus of books” over the period selected. That is the simplest application of ngram. There are many other methods to append a phrase or term but for now frequency of patient engagement between between 2001 to 2008 this provides a sense of its pervasiveness. 

A Google search of patient engagement returned 13,500,000 results. A PubMed search returned 4,993 results. And just for kicks Google Scholar returned 640,000 results. Patient engagement exists. The literature addresses the benefits of patient engagement, how to achieve it, what do with it, etc. etc. We are not short on what patient engagement is and what it can accomplish or in many cases what it won’t accomplish. What we are missing is what Paul’s comment hints at, the reality of real patients wanting to engage. 

We know there is a large, dynamic, and engaged group of consumers/patients who are using the Internet to manage their health and this is not limited to self-help. Caregivers are among the largest group using the Internet to search for knowledge about healthcare for a loved one. What all these consumers/patients have in common is the desire to find solutions to healthcare problems they or a loved one is facing. They want knowledge. And they are finding it,sharing with others, and at times sharing with their HCP. But there is something missing here. 

This large and to Paul’s point an entire generation of patients who are finding knowledge and learning about healthcare they are longing to be engaged in order to be guided.They want to share what they’ve learned with their HCP. They are seeking to add more knowledge to what they’ve learned or replace non-EBM knowledge with better knowledge. They are looking to be active, receptive, and ready to manage their health and healthcare. Sounds obvious. It is. But are we harvesting that for the greater good?

Consider these patients/consumers learners. They are in a zone. They have a passion. They are not unlike children who are wide eyed and eager to use what they’ve learned. They are a perfect example of how the HCP, providers, insurance companies, and other patients like them can be motivated to take action. They want to reside in an environment where they can be inspired to improve their health. Otherwise why would they spend time searching and trying to solve their healthcare problems. The active engagement of these learners in their healthcare will change the fabric of the relationship with their HCP, the institution, and insurer.  
It is time we look at patient engagement less like a clinical trial and more like harvesting a rich crop of patients who will be at the heart of our future healthcare. They are a tip of our collective path to improve our healthcare. 

Notes & Links: August 29, 2013

Curated Social Media Resources About Disability
Webicina has curated an excellent collection of disability focused blogs, podcasts, slideshows, mobil application and community sites. Another fine resource from this site. Spead the word.

The Most Effective Obamacare Delay is Defunding
Chris Jacobs writing in The Health Care Blog reiterates the current scream from the right; defund Obamacare. He makes the argument that real conservatives don’t want to shut down government to destroy Obamacare. It reads like this:

We should not buy into the false assumption that efforts to defund Obamacare equate to a shutdown of the federal government. Heritage and others have pushed for Congress to fully fund regular government operations and separate Obamacare from annual appropriations. But conservatives of either party in Congress have no leverage on any of these critical issues unless the President believes that he will have to assume the responsibility of a government shutdown.

It is an interesting argument but more to my posting this are the comments. Comments alone are worth the price of reading this standard conservative blah blah about making sure only the few have healthcare. The comments are rich with pro and con and a smattering of wing-nuts.

EveryMove Launches the EveryMove 100 Health Insurance Index
Russell Benaroya writing on The Health Care Blog introduces a newly minted list of health insurance companies focused on engaging consumers to help them take control of their health as a partner. The index evaluates the following categories:

Social media presence and interactions (breadth and depth of engagement)
Mobile investments (mobile web and app ecosystem)
Website statistics (popularity ranking, refreshed content)
Customer support access (availability/ease of access)
Current consumer satisfaction (what are current members saying)

Beyond the fact this is a great index and it helps consumers find new measures to use when selecting health insurance Benaroya speaks to the strategic need of insurers to engage patients better through new media, mobile, and just plain customer service. The index can be found here.

Using Twitter to Examine Smoking Behavior and Perceptions of Emerging Tobacco Products
Myslin, Zhu, et. al. publishing in JMIR offer what is the future of using Twitter to perform effective and highly relevant “infoveillance”. We all know what Twitter is and how it works. Many of us know that Twitter is being used by the CDC regarding influenza informedness as a health status surveillance methodology. We also know Twitter has uncovered poor public informedness and misuse of antibiotic. But this for this study Twitter is used to:

  • perform content analysis of tobacco-related tweets
  • improve signal to noise ration in Twitter by automatically filtering out irrelevant content 
  • demonstrate the utility of Twitter in addressing new public health challenges re: tobacco 


The authors with their very complete and carefully designed study have been able to identify opportunities for tobacco education.

The next most common genre, marketing, is followed relatively distantly by information and news, and most tweets in these categories are not posted by recognized health or news organizations. In sum, reliable information is far less accessible on Twitter than are opinions, marketing posts, and information from unverified sources, indicating potential for greater public education in tobacco prevention policies.

Think about the above and how Twitter is void of EBM references to tobacco use and it’s outcome. 

In this regard, Twitter surveillance may reveal insights not available through surveys, where participants do not spontaneously relate experiences to an audience of friends and followers and are instead more likely to express more carefully crafted opinions. Indeed, surveys may thus underestimate the prevalence of positive sentiment toward tobacco.

And Twitter allows us see deep inside the person, their motivations, reactions, and driving forces. Very important if we are to engage people in their healthcare beyond tobacco. Let’s say we do this same analysis on hypertension and behavior. 

The authors are quick to identify the fact they only used 1% of Twitter feed and their annotated dataset was small as was their number of smoking keywords. But all in all this is a fantastic look at the potential of Twitter to uncover and point out direction for education and engagement. 

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.

Notes & Links: August 26, 2013

Consumers’Perceptions of Patient-Accessible Electronic Medical Records
Zarcadoolas, Vaughon, et. al publishing in JMIR completed a qualitative study to to identify vulnerable consumers response to patient portals and how they perceived the value and utility. 

The authors do an excellent job of defining an electronic health tool and patient portal with the bottom line being “allowing consumers to take greater control of their health information by changing traditional top-down (doctor to patient) methods of health communication and improving satisfaction with provider communications and overall care”. This is the outcome we’ve all been seeking in healthcare. 

The authors take care to clearly establish how consumers are more and more interested in accessing their personal health information online and reference a Markle Survey on Health in A Networked Life reports that nearly 70% of the publish and 65% of physicians believe patient should be able to access and retain their health records. In addition the authors note and examine the fact their is a vulnerability of certain populations to disparities in health outcomes and quality care. These groups being poor, immigrants, and lacking English proficiency. 

The authors examined participants record-keeping behaviors, sources of health information and initial response to the idea of patient portals. The Key Themes that emerged from this study were:

  • Consumer/Patient Empowerment-“Information is Power”
  • Extending the Doctor’s Visit/Enhancing Communication with HCP
  • Literacy and Health Literacy (The authors capture critical information that will drive these results)
  • Prevention and Health Maintenance
  • Privacy and Security Concerns
  • Response to the Concept of Patient Portals with More Information: Post Demonstration

The intent and promise of patient portals is that they will help engage people with their health, improve preventive care behaviors, and permit better management of chronic conditions. A handful of recent studies have begun to examine patients’ uptake of portals as well as patients’ perceptions and assessments of their actual use. Consistent with the views of our study participants, users report finding great value in patient portals [73], a perception shared by a wide range of patients, including those with mental health and substance abuse issues [68] as well as patients with HIV [67]. In general, patients report that portals positively impact communication with providers, and improved knowledge, empowerment, and self-care.

This is a great study and will help those of us looking to improve and expand patients involved in their healthcare and their engagement with their HCP. Another paper to print read and save. Their conclusions are more extensive and deserve to read and considered. 

Why Doctors Should Stay Out of The Business of Building EHRs
Fred Trotter writing on The Health Care Blog addresses the fact many physicians are ‘writing their EHR’ from scratch and how they have to step away from the screen and leave it to the professionals. His primary argument is that we need to have these tools built by those who know how. 

A doctor developing a new EHR system from scratch, by themselves, without extensive Health IT programming experience is in over their head. If they continue to develop an EHR, even after being warned of the dangers here, then this is hubris.

Ask yourself: Are you absolutely sure that this action is not a fundamental violation of the oath that you took when you became a doctor?

I would take it a step further and consider the article above from JMIR on how a well developed and crafted EMR along with a patient portal can change care and the patient physician engagement model. This further speaks to the need for educators and communicators to build and drive EMR.

By the way the comments are one big pissing battle which should not be confused with the need to use EMRs to drive engagement, patient care, learning, and outcomes.  

Notes & Links: August 23, 2013

XX in Health- Canadian Women Changing Health
Let’s head north and cross the Canadian Boarder for a quick look see in healthcare. XX in Health Week is examining the issue of gender diversity in health leadership. One of the features of this activity is putting the focus on women in healthcare who are not recognized. These are not CEO’s but women with limited resources but with a bottomless well of innovation, persuasion and enthusiasm to drive health in Canada. There are 22 women featured. Colleen Young who I know from Canadian Virtual Hospice an online hospice support and reference site where I have participated. I am pleased to see her being recognized along with 21 other women. These stories are motivating and enlightening. An important read for us all who believe in healthcare, social media, and the drive to change health. 

Swatch Girls Pro Junior Surfing France
Totally off the topic of healthcare and medicine but so on the topic of social media. A major brand is supporting girls pro surfing circuit. The placement of Swatch within this event is perfect. The Web site is of the highest quality with live feed from France. Obviously they have @swatchgirlspro and Instagam. They have videos from the all the days events and activities. And live interviews done in a hanging basket(egg) chair rigged with video equipment sans photographer. This all holds together well and speaks to how a brand, event, demographic, web, social media, and video can all be put into one seamless package that works. I would question the use of Twitter since the timeline is behind a few hours. Not sure why. Check it out just to see how this all comes together. 

Wikipedia: Medical Articles Translation Task Force NeedsVolunteers 
Dr. Bertalan Mesko writing on ScienceRoll is seeking volunteers to make the many medical entries on Wikipedia available in many other languages. You can find details here.

Notes & Links: August 22, 2013

The Emergent Discipline of Health Web Science

Luciano, Cumming, et. al from Web Science Research Center, Tetherless World Constellation, Rensselaer Polytechnic Institute published a viewpoint examining how Web Science in relation to health maintenance, health care, and health policy opens the door to Health Web Science as a sub discipline of Web Science. It is different from Medicine 2.0 but fits within. 

This is one paper that you may want to print and read over and over and examine. It is rich with ideas not just for the Web but, ideas that we can use to create new, better, smarter, and practical patient/HCP engagement and drive improved outcomes. 

Understanding and appreciating the overlapping yet divergent disciplinary orientation of Health Web Science (HWS) compared to related research domains motivates specific research efforts around better utilization of, innovation on, and communication over and within the Web. 

They ask what is Health Web Science. Their answer is multi layered but this sums it up the best:

The distributed, adaptable, and highly flexible nature of the Web facilitates the shift from the current model of a centralized, hospital-focused and provider-centric infrastructure, to one where the hospital plays a coordinating role and interacts with the “long tail” of the patient population in a more distributed manner, such as through a peer-to-peer model [12]. Moreover, the Web can play a useful role in tailoring health care to individual needs based not only on medical conditions but also on personal, family, and social factors. Thus, HWS is integral to exploring options and finding solutions to the health problems of the 21st century in both the developing and developed worlds. HWS will enable this shift to a more patient-centric model, as it helps provide the evidence base of which technologies designs and structures work best where and when, under what conditions, and for whom. 

They continue with a discussion of Web Observatories which is interesting just from a language use. For them it is ‘an integrated collection of data sources and data analysis tools that enables observation and experimentation for Web study‘. They offer the challenge that most of the data residing on the Web is difficult to access and use. We need to change that if we want to create ‘software application that use the transformed collection of datasets‘. 

Other discussions they have are:

  • Social Networks in Health Web Science
  • Patient Engagement Through Citizen Science and Crowdsourcing
  • Sensors, “Smart” Technologies, and “Expert Patients”
  • “Big Data”, Semantics, and Other Integration Technologies
  • Rapid, Automated, Contextualized Knowledge Discovery and Application

This is worth reading just to know what the hell is citizen science or learning about big data and semantics. More importantly it is points to our future in healthcare and the Web. I would imagine all those 20 somethings coding apps for healthcare may not read this. 

Antipsychotic Drugs Raise Diabetes Rich in Kids’, Study Finds 

This title popped up in an email from the Wall Street Journal. It was behind the WSJ paywall so I am resorting to WebMD whose title read “Antipsychotic Drugs May Triple Kids’ Diabetes Risk”. In either case my gut check was, like we didn’t know this? We knew for years the cardiovascular risk of antipsychotic drugs in adults and weight gain etc. etc. So why wouldn’t this apply to children? Especially since these drugs are off label for children. 

“We found that children who received antipsychotic medications were three times as likely to develop type 2 diabetes,” Ray said. “It’s well known that antipsychotics cause diabetes in adults, but until now the question hadn’t been fully investigated in children.”

The study published in JAMA Psychiatry (also behind a paywall), looked at 29,000 children aged 6 to 24 in Tennessee Medicaid program who recently started taking antipsychotic drugs for other then schizophrenia or related psychoses. 

That is only one state. That is a socioeconomic group of the poorest and most disadvantaged. Stop and consider 29k recently dx in one state. And most of this prescribing is off label for most. That’s a whole different discussion.

The findings should lead doctors and parents to question the “off-label” use of antipsychotic drugs for conditions other than schizophrenia and psychosis, said Dr. Ken Duckworth, medical director of the National Alliance on Mental Illness.

You think? 

More Unintended Consequences of Digital Data: An EMR Gave My Patient Syphilis

How can you not want to read this. You know you do. Just goes to show us that a great headline drives readership. Think about the NY Post famous headline “Headless Body in Topless Bar”. 

Val Jones, MD writing in Better Health presents his experiences with EMR and it is eye opening. I have largely steered away from getting caught up in HCP bitching about going EMR since change for the better is not easy. Suck it up and do it. Dr. Jones clearly states up front that he wanted this to happen.

I used to be a big believer in the transformative power of digital data in medicine. In fact, I devoted the past decade of my life to assisting the “movement” towards better record keeping and shared data. It seemed intuitive that breaking down the information silos in healthcare would be the first logical step in establishing price transparency, promoting evidence-based practices, and empowering patients to become more engaged in their care decisions. Unfortunately I was very wrong.

So let’s peek behind the curtain on the ground of EMR. 

In one of my recent notes the Indian transcriptionist misheard my word for “hydrocephalus” and simply entered “syphilis” as the patient’s chief diagnosis. If I hadn’t caught the error with a thorough reading of my reformatted note, who knows how long this inaccurate diagnosis would have followed the poor patient throughout her lifetime of hospital care?

I am a crap proof reader this is a huge responsibility for HCP to catch these errors and the time it takes as well to proof the EMR against the actual record. In advertising, CME, etc. proof reading is critical. In healthcare it is life and death. 

Situated in a dark room surrounded by enough flat panel monitors to put a national cable network to shame, about 40 young tech support engineers were furiously working to keep the EMR from crashing on a daily basis – an event which halts all order processing from the ER to the ICU. Ominous reports of the EMR’s instability were piped over the entire hospital PA system, warning staff when they could expect screen freezes and data entry blockages. Doctors and nurses scurried to enter their orders and complete documentation during pauses in the network overhaul. It was like a scene from a futuristic movie where humans are harnessed for work by a centralized computer nexus.

And we wonder why hospitals charge so much for knee replacement. And to think once this effort is completed those rooms, equipment, and personal will be ‘downsized’ and savings realized is dead wrong. 

I give Jones credit and credibility because he started he was and is an advocate and now sees how a good idea is being ruined by crapy execution. 

Karl Rove’s Health Care ‘Ideas’

Aaron Carroll writing in The Incidental Economist deconstructs Karl Rove’s WSJ article ‘Republican Do Have Ideas for Health Care”

Carroll goes basically point by point examining and referencing Rove’s statements. This is well written and can help us all see some of the issues, needs, and solutions that must be addressed in healthcare. As usual Carroll states his view well and supports it equally well. Let me give you the money shot: 

No matter what Mr. Rove says, however, none of these constitute real reform. None of them will significantly decrease the number of uninsured in this country. None of them will help people with chronic conditions to get care. We may lower spending, but by making things worse for the people who need care the most. It’s easy to insure people who are healthy; it’s also cheap. That’s not the point of the health care system, though. Real reform tries to get care to those who need it most. That’s much harder, and it can cost more money, but that’s what we need.

That is it in a nutshell, caring for those who need it and knowing it will cost more money. 

Caregiving My Opinion and Experience

My essay on caregiving was submitted last month to the Mayo Clinic Patient/Caregiver Scholarship 2013. Three great smart writers wii win a chance to go Mayo’s media week for free. I didn’t make the cut. But Mayo being the monolith of healthcare social media scored these results: 

We had a record number of participants, and through the process drew lots of attention to your stories. There were more than 18,000 page views of the essays, more than 1,800 comments and nearly 1,300 likes, and essays were shared on Facebook and Twitter more than 4,500 times.

Well done. They can sure work a social media room. 

Are we born caregivers? Do we surrender to caregiving? Where do we learn to be a caregiver? How do we measure caregiving?

Donna was a creative director. Her sense of type, layout, art, design, color, and copy was nothing short of brilliant. Donna was smart, strong, independent, and extraordinarily creative. She fought for every success and did not tolerate fools gladly. In 1979 that is the woman I fell in love with. In 1983 I married her.

January 2009 Donna was diagnosed with Stage IV NSCLC, told on voice mail at work you have six months to live. On February 6 Donna had a craniotomy. Two months later she began whole brain radiation. And in another two months began the first of three rounds of chemo. July 11, 2011 she was admitted for a thoracentesis. July 18 Donna was transferred to hospice. On August 7, 2011 she died.

I closed my business to become her caregiver. Donna put her disease in my hands; she gave it to me to manage and guide her. It was hard to imagine that I was guiding the strongest and smartest person I know. I read somewhere “Courage is not the absence of fear it is the presence of dignity in the face of fear.” She was dying yet she kept her dignity.

All through our marriage I made big family centric Sunday dinners for the two of us because as a child those meals were non-existent for her. That was caregiving sans the disease. During her illness caregiving accelerated and morphed: teaching her to ride a bike, helping with the nausea, vomiting, severe alopecia, hypertrophic osteopathy, preparing pill packs, and communicating with friends about her disease. Rallying friends to visit her in the hospice.

Toward the end I would come home from my part time job and just sit on the stoop afraid to see the disease the pain. I was broken and scared. But I went upstairs because it was my true job, my one love, my only universe, and our life.

Caregiving is an emotional rip tide dragging us out to sea to partake in our drowning but it frames love like nothing else. We give care to the best of our abilities but do it for all intents and purposes alone. Over time caregiving debilitates us physically and emotionally. Can that be changed?

We are not given a caregivers toolbox. Where do caregivers rally to find hope, help, and healing? With family, friends, colleagues? How do we measure if we are doing it well?

Caregivers acquire vast amounts of healthcare knowledge. They are little knowledge machines filled with hope and pain. My wish, this essay will be used to create caregiver toolbox of help. And other caregivers past, present, and future will find a voice. Our caregiving experiences can help others reflect and grow. And survive the crushing aloneness of our life after the death of a loved one.

Notes & Links: August 21, 2013

How Obamacare Will Harm Cancer Patients

Scott Gottlieb, MD contributor to Forbes has a rather lengthy analysis of Obamacare and how It will hurt cancer patients. Dr. Gottlieb goes into great detail to make the point. 

 First, Obamacare is going to block the ability of patients to seek out the specialist doctors who are most likely to prescribe these cutting edge treatments.

Obamacare tries to coerce doctors to cut down on their use of costlier drugs and tests by changing the way that they’re paid. The law uses “bundled” payments, where doctors get lump sums of money to care for patients with particular medical problems. The idea is to pit the cost of the treatments doctors prescribe directly against their earnings and give doctors a potent incentive to use cheaper remedies.

Obamacare targets cancer drugs directly, by expanding a program called 340B, which siphons money away from drug developers in order to subsidize hospitals. The Obama Administration sees the program as a way to prop up the hospitals (a favored constituency) on the dime of less popular drug makers. But the oblique way the money is extracted from drug companies spawns a lot of harmful consequences that are increasing the cost of cancer care, and lowering its quality.

Gottlieb further makes the case that over 20 years total spending on cancer care was stable at 5%. And further how inpatient cancer admissions fell from 64% in 1987 to 27% in 2001 to 2005. 

His closing thoughts are focused on the cost of cancer drugs and the high cost of developing thuds drugs. 

Instead, Obamacare limits access to specialist doctors in order to cheapen insurance products, uses financial schemes that pay doctors more to do less, and targets the drugs that represent so much of our recent progress against cancer.

I agree with this thought and logic but I am not familiar enough with the 1,220 pages in the law to debate the overall message he is presenting. And I would trust his logic and data but I must say the conservative press has picked up on this and is running like crazy with the headline and not looking at the message of cost of drugs. If anyone out there has more information on this please share.

Use of Twitter Among Local Health Departments: An Analysis of Information Sharing, Engagement, and Action

Neiger, Thackeray, et. al from Brigham Young University Department of Health Science publishing in JMIR examined how local health departments (LHD) used Twitter to share information, engage with followers, and drove action behavior. In addition they looked at differences between LHD’s by size of populations served. 

While some evidence suggests that broad dissemination of information characterized by traditional mass media campaigns can improve population health, effective campaigns require simultaneous availability of and access to programs, services, and products that facilitate change [29]. Furthermore, broad dissemination of information ignores the fact that messages should be targeted to the intended audience. In the case of Twitter, LHDs may know nothing or very little about their followers unless they engage in dialogic communication to establish relationships. To indiscriminately post information on Twitter is inefficient. In fact, this contributes to what has been described as a fractured and cluttered media environment that can be resolved only through careful planning and testing of campaign content with intended audiences [29].

It was encouraging that at least one-third of LHD tweets attempted to engage followers, foster relationships, create networks, or build communities. These results are similar to those found by Lovejoy and Saxton in their analysis of how nonprofit organizations use social media [10]. Use of personal pronouns was present over a third of the time and more common among smaller LHDs. Additionally, evidence of effort toward dialogic communication included tweets that tended to be conversational in nature and may have used personal pronouns but were not necessarily intended for the purpose of engagement. This evidence of more conversational posting indicates LHDs may be trying to create a Twitter persona that is warm and friendly, thus making it more inviting for Twitter users to follow.

Are we beginning to see the fruition of social media (i.e. Twitter) in healthcare providing a welcomed and valued dialogue with health departments that improve the health of populations? I hope this data is only the start. 

Usage of a Generic Web-Based Self-Management Intervention for Breast Cancer Survivors” Substudy Analysis of the BREATH Trial.

van den Berg, Peters et. al from Radbound Rniversity Nijmegen Medical Center in the Netherlands publishing in JMIR have a fascinating and important look at how generic Web-sites are used and can be better designed for breast cancer survivors. This is an important study in my view because we are beginning to look at patients as learners based on usage statistics. This is providing ‘realistic estimation of exposure to intervention content“. Further the authors note “results suggest that investigating how generic fully automated Web-based interventions are used is far more informative than the amount of exposure. Usage statistics should be chosen accordingly.” 

 This is an important a first step. I believe we need to look at how these survivors are using this information to learn and what problems they are seeking to solve. 

The stated objective 
To gain insight into meaningful usage parameters to evaluate the use of generic fully automated Web-based interventions by assessing how breast cancer survivors use a generic self-management website. Final aim is to propose practical recommendations for researchers and information and communication technology (ICT) professionals who aim to design and evaluate the use of similar Web-based interventions. 

This study underscores the added value of evaluating usage statistics of generic Web-based interventions as a realistic estimation of exposure to intervention content. To the best of our knowledge, the present study gained first insight into the design of technical usage evaluations of generic fully automated Web-based interventions. Overall, and in concordance with research on more interactive eHealth applications [38], results suggest that investigating how generic fully automated Web-based interventions are used is far more informative than the amount of exposure. Usage statistics should be chosen accordingly. Further, it is recommended to collect both singular and composite usage statistics, include self-reported usefulness, and to pilot test a variety of usage statistics to aid decision making of meaningful usage parameters. Last, shared knowledge about ICT and conducting research is helpful in developing a meaningful rationale of technically recorded usage statistics of generic Web-based interventions.

Notes & Links: August 20, 2013

Why Health Insurance is So Expensive

Ya gotta love the title of this contribution by Sandra Mills on HealthWorks Collective. Even more to love is an amazing, clear, and well designed info graphic. One of the best I’ve seen but the topic keeps you focused and shocked. 

The seven most significant causes to increasing cost are:

  1. New medical technology
  2. Provider price inflation
  3. Low primary care use
  4. High spending on specialists
  5. Aging population
  6. Increase of chronic illnesses
  7. Fraud

Take a look at the graphic a lot of pictures tell a sad story.

Vintage Typefaces

John Gruber of fame had this link. For those of you who are into design and type. Take a look. Type is the most critical element of good design just ask Jonathan Ive.

How to Start A Conversation About Estate Planning

Forbes has a nice 8 panel set of facts about discussing estate planning. This is important so is the Will, end of life planning etc. I think has this and more covered so very very well it is worth a look. No it’s worth the time to do it. 

Notes & Links: August 19, 2013

iPad Applications in the Healthcare Industry: Fad or Future?

Todd Riddle posting to Healthworks Collective takes a look at apps on the iPad and its utility for both patient and HCP. There has been a huge growth of iPad apps in healthcare albeit slower due to legal, medical, and patient issues. But it is changing rapidly and growing. Riddle quotes data that states by 2015 there will be 500 million smartphone users accessing healthcare application. Pretty impressive. 

Advantages of iPad healthcare apps

  • Patient safety
  • Easy access to information
  • Increases efficiency
  • Minimizes costs
  • Effective use of audio, video, visual communications modes


  • Not always accurate and consistent (I believe we need to expect studies on apps and outcomes
  • Security and confidentiality 
  • Regulatory challenges

Top iPad healthcare applications

  • Medscape
  • MedPage Today Mobile
  • Radiology 2.0: One Night in the ED
  • Calculate by QxMD

 Riddle concludes with

Since healthcare apps are extremely sensitive, it is developer’s responsibility to rigorously test app. Quality compromises could be costly. It is equally important that user conducts a thorough due diligence of app such as checking developer’s bio, user feedback, and its reputation on the net before actually installing/using it. 

Jenny McCarthy and the Selling of e-Cigarettes

Orac on ScienceBlogs points out Jenny McCarthy is now hocking blu eCigs. Now this is the same Jenny McCarthy who is anti vaccine since it is an unproven cause of autism. Let’s think about this. No evidence based proof of the link between vaccinations and autism but there are clear causative data about tobacco and disease. Orac goes into great detail to examine the data on eCigs and clearly we don’t know yet. 

Although short term studies of e-cigarettes appear not to have found any evidence of significant harms, there are currently no solid long term data regarding the effects of inhaling the vapors produced by e-cigarettes. A recent review concluded that the vapors are likely safe, but did so based on primarily on a review of chemical analyses of e-cigarette vapor. A more recent analysis finds some toxic chemicals in e-cigarette vapor butat much lower levels than in tobacco smoke. Again, however, there are no long term epidemiological or observational data in actual humans using e-cigarettes.

This is an excellent review of eCigs but more important how the hell can Jenny McCarthy do this while trashing vaccinations? 

What Americans Don’t Know About the Affordable Care Act

Danyell Jones posting to HealthWorks takes a look at where we as a nation stand with our knowledge of ACA and offers ways we can learn more and be better informed. 

There is the chart from Kaiser Family Foundation showing that country feels we will be worse off.