Grief Mirrored in Language and Metaphor: Karen Russell

I’m a huge radio and podcast listener. It’s a primary means for learning, relaxation, and escape. Today listen to a Fresh Air interview with the author Karen Russell ”Sleep Donation’: A Dark, Futuristic Lullaby For Insomniacs” I was struck by her language and metaphor. The narrator  of that novel is suffering grief from the loss of her sister. All italics are from Karen Russell and the interview. 

The longer I listened the more Russell’s language evoked new reflection on my grief and loss which I have written about herehere, and here. Yet hearing her words and seeing the images they evoked made me realize I may just be “water boarding the reader” with what I have shared. I thought I would revisit this old chestnut grief to see if I could better capture it. 

Early in the interview she reads from her book and reads ‘to be evicted from your dreams‘. That for those who have not suffered grief is exactly what it is in six simple words. We have been evicted from our dreams of the life we had, the life we were working toward, and life we wanted. Suddenly we are thrust into a ‘Subaqueous state’. For me it has been that way since Donna died. I reside underwater unfocused and floating while struggling to find the surface. 

At the end of the podcast she is referring to another book ‘Swamplandia’ and said ‘Cue ball break of grief where everyone goes into their separate pocket’. How true and accurate, we all end up in our own places when we grieve. Everyone’s grief is different. And I will add for me it is not one place, it moves. My grief is organic. A HCP said to be “You have adapted well to your loss.” Wanting to be the good patient I drank that kool aid without measure. It was bullshit to a point said to clear the desk and chart notes. Yes there are days I feel adapted to my loss, yet that adaption is a moving target that requires us to keep careful aim in order to understand and learn. 

I will live with my grief as my partner and manage it like a tool to grow, learn, and motivate. I’ll not allow it to weaken me. Though I have been evicted from my dreams I will work to regain them each night. 

Physician Rating Websites Who Uses Them: A New Study

Terluter, Bidmon, Rottl, submitted an original paper in JMIR “Who Uses Physician-Rating Websites? Differences in Sociodemographic Variables, Psychographic Variables, and Health Status of Users and Nonusers of Physician-Rating Websites

Physician-rating Web sites (PRW) exist and are growing, yet use by patients falls short. The authors set out to examine different variables, including sociodemographic, psychographic and health status of users and non-users. 

29.3% of the sample knew of PRWs with 26.1% said they had used a PRW. Those patient users who were younger and more women participated. Also more highly educated and those with chronic diseases were higher in use. Interesting to note users were more positive about the Internet than non-users with a higher digital knowledge. Not surprising but nice to see it captured in a study. 

Adding psychographic variables and information-seeking behavior variables to the binary logistic regression analyses led to a satisfying fit of the model and revealed that higher education, poorer health status, higher digital literacy (at the 10% level of significance), lower importance of family and pharmacist for health-related information, higher trust in information on PRWs, and higher appraisal of usefulness of PRWs served as significant predictors for usage of PRWs.

In the end use of the Internet and PRW remain the domain of a younger demographic, women, and those chronically ill. It comes down to what we all know, design, usability, and accessibility makes a difference. And the authors note clearly we need speak to the innovators, females, better-eduated, and younger users. This will help you to identify out what strategy is needed for a PRW and how to include a social media to customize messaging. This is a great study filled with information we can use to improve patient physician engagement

Empowered Patients: The New Black or Old Hat?

Pam Todd writing on HealthWorks Collective “From Patient Partner to Patient Leader” makes the case that empowered patients are an integral part of our healthcare landscape beginning with clinical trials through to patients and caregivers active participation in their care. I will not argue with that nor the fact tons of research show how much time people spend searching online for healthcare information and knowledge. 

Todd further identifies how the FDA is listening to patients, the WikiProject Medicine, and this quote:

“The patient is not the partner in medical care; the patient is the leader, the pilot, the decision-maker.Patients don’t need recommendations; they need information about the added benefit of one therapy versus another balanced against the added harm of the therapy. People are smart enough to make the trade-offs; they don’t need to be told what to do.”

What then is the role of the doctor? Here is their answer:

“Changing medicine from a ‘telling what to do’ profession to a ‘telling the patient the information’ profession will lead us to a better system of care, better in every way. The profession of medicine should have the goal to serve and inform, not recommend.”

This exists, it works, and it fits with adult learning, people what to find solutions to problems they are having. If my health is crap that’s a problem and I want to solve. This is demonstrated by the fact people with chronic illness and those caring for them seek health information at a very high level and if they have two illnesses it is even greater. You can find more information herehere, and here. Yet in my mind I see the physician being the weak link in this model. This is especially true for older physicians who came up through the time of parental medicine where the learned medicine man (woman too) knew all and lead not listened. This is changing over time with younger physicians who have been raised on FB, Twitter, Google Search, etc. having an easier time identifying with these empowered patients. 

How can first measure what impact patient driven knowledge and empowerment is having on their care from their own view, their HCP behavior, evidence based outcomes, and does a physician who supports and drives patient empowerment see different outcomes from those who do not? Finally dose the HCP have the time to respond to engaged patients effectively?

Finally my chant at times is not WebMD but MyMD. That is where physicians can make the biggest difference in managing and engaging patients by becoming a resource for knowledge or as said above “to serve and inform, not recommend.” This is about leveraging the current patient to improve outcomes of those who are engaged, helping those seeking to engage to be more productive, and getting those who may not want to engage to consider it part of their personal health portfolio. 

Early HIV Treatment: The Value in Life and Dollars

Bill Gardner writing on The Incidental Economist examines two studies in Health Affairs that look at “Treatment as Prevention: The Value of Early Treatment of HIV Infection” 

Compared to people who initiated cART late…, those who initiated treatment early (with a CD4 count of 350–500) could expect to live 6.1 years longer, and the earliest initiators (with a CD4 count of more than 500) could expect an extra 9.0 years of life.

cART is expensive, but it turns out that

[t]he total value of life expectancy gains to the early and earliest initiators of treatment was $80 billion, with each life-year valued at $150,000… The value of the survival gains was more than double the increase in drug manufacturers’ revenues from early cART initiation.

Clearly more studies similar to this are needed for other diseases. What are the benefits for life and what are the economic benefits. 

Thinking About What You’ve Learned: Key to Improving Care

Renner, Kimmerie, et. al publishing in JMIR “Web-Based Apps for Reflection: A Longitudinal Study With Hospital Staff” examines how a web based app can improve reflection which is a key component of learning and aids us our ability to apply new knowledge to previous experiences in order to create new learning. Reflection does not just happen since it is complex and demands the learner develop skills on reflection. 

One area where reflection and reflective thinking are broadly researched topics is in the health care sector. A special focus of previous research has been on the education of nurses and physicians. In hospitals, reflection helps the staff combine theory and practice and enables them to turn experiences into learning opportunities. In this way, reflection and reflective work behavior foster continuing professional development. Research findings in this field suggest, however, that reflectivity is indeed not an easily applied skill. Instead, guidance and support are needed to achieve higher levels of reflection.

The study had 167 employees from a hospital participated. They were involved in user studies and workshops to better understand reflective behavior and the needs of the hospital staff. Each was provided with devices and apps. The apps they were given were DocTrainCLinIC-The Virtual Tutor, and Talk Reflection

The primary findings to test whether the introduction of apps that support reflection would affect staffs actual reflection behavior at work. 

As expected, there was a positive relationship between reflection behavior and job satisfaction, indicating that higher levels of collaborative reflection processes go along with enhanced job satisfaction among participants in the hospital. This further supports the findings of other authors regarding a relationship between informal learning and job satisfaction as introduced above. The content of our collaborative reflection scale suggests that being provided with sufficient time to reflect, reflecting collaboratively in a team, and discussing work with a supervisor go along with a higher level of job satisfaction.

This is an excelelnt read but more importantly it offers a way to help medical student and all HCP improve their ability to apply what they’ve learned to their experiences to produce new knowledge that improves care. 

Dunning-Kruger Disease and the Non-Vaccinating Parent Cartel

At Science Blogs Respectful Insolence introduces me to Dunning-Kruger Disease “Pediatricians versus the Dunning-Kruger effect on vaccines.”

It’s the phenomenon whereby people who are unknowledgeable or incompetent about a topic have a falsely elevated estimate of their own knowledge base. In the antivaccine movement, the D-K phenomenon tends to take the form of parents who think that their University of Google knowledge trumps the knowledge of physicians and scientists who have dedicated large swaths of their lives to the rigorous study of conditions such as autism and the question of how vaccines work.

We get a look inside a wine and cheese event where non-vaccinating parents share their adventures in turning science and health back to the dark ages while lifting their behavior to the highest level of self-delusion.

This is well worth the read and it’s shock value to science and what happens when a patient is fired by a pediatrician. 

More on the Choir Syndrome

Dr. Vartabedian writing on his blog 33 Charts offered the following post “When Hospitals Engage by Megaphone” His point which is brilliantly stated…

And so organizations learn to engage by megaphone. Volume, it seems, is the greatest metric of success.  And as long as unidirectional output can be formatted as a graph on a Powerpoint slide, the beat goes on.

As it turns out, no one listens.  People care about themselves, not minimally invasive surgical centers.

Put in my terms adults will only learn when they are seeking solutions to problems. They do not want to be sold to or shouted at. Know what I need to learn and serve it up. 

The Choir in the Echo Chamber: Social Media’s Narrow Vision

JMIR just published a paper “Are Public Health Organizations Tweeting to the Choir? Understanding Local Health Department Twitter Followership” by Harris, Choucair, Maier, et. al. The authors note that only 61% of local health departments meet standards for information and educating constituents. There is a gap in current and best practices. The objective of this study was to examine local health departments Twitter followers and their relationship with local health departments and their followers characteristics. The sample size was 4,779 Twitter followers from 59 random health departments. 

Results, local health department Twitter accounts were followed by organizations in greater numbers and were health focused located out of state. They most comprised education, government, and non-profits. Surprising was the finding that individuals were more likely to be local and not health focused. And when the health department has a public information officer on staff and tweeting they were likely to have higher percentage of local followers. 

The gross anatomy of this study is that we tend to talk to ourselves. This can be seen in Twitter chats such as #hcsm #dwdchat. Generally participation are made up of the same faces. Though the discussions provide great new information it remains in the echo chamber and is not driving greater participation or broad based learning though I will say the outside chats posts using the # are many times retwitted and reach a wider audience but still limited to those who share similar characteristics. 

I have long said we need to understand who we are speaking with and what are their characteristics to better target them. The authors note 

…we identified the characteristics (eg, jurisdiction population size, employing a public information officer) and practices (eg, tweet frequency) associated with local health department Twitter follower characteristics. This information could inform strategic planning for local health departments using or considering using Twitter. For example, if a goal of a local health department is to reach greater numbers of individuals rather than organizations, their Twitter strategy could include a regular daily or weekly tweeting schedule.

Second, understanding who the Twitter followers are could help local health departments better target tweets to diverse audiences. For example, local media and policymakers may be important followers for a local health department. Standard strategies (eg, tweeting more, developing an easy-to-find user profile ) for increasing the number of followers may bring in more media and policymakers. However, additional research into how media and policymakers on Twitter select specific information sources may help to identify strategies for local health departments in increasing the presence of these followers. As another example, out-of-state organizations are less likely to be interested in tweets focused at the individual, as well as locally focused or locally relevant tweets about health and health-related events. However, these followers may be interested in learning about innovative or successful local health department programs and best practices. Local health departments wishing to connect and engage more with this existing audience might program their Twitter accounts as dissemination platforms to reach these organizations with relevant information about successful strategies and programs.

Bottom line, we need to use social media the way we’ve always approached communications, advertising, marketing, and sales. Know our audience, know where they are, know what they want to learn, and speak to them frequently. They want to solve their healthcare problems. Know what those problems are specific to their learning needs.