Research

While I publish many memoir, essay and profiles pieces in my role as columnist and free-lance writer, I am informed by research as well as personal experience.

Below, are samples from two position papers I recently authored as part of my work with for a healthcare organization considering a Writing for Wellness Pilot Program on-site.

1, Trauma Survivors & Super Utilizers of the Healthcare System (excerpt)

The rarely understood connection between groups of people – super utilizers and trauma survivors – will be explored.  The topics will be covered broadly at first.

  • Super Utilizers. The small percentage of the population consuming a disproportionately high amount of healthcare resources sought most often in crisis and at a hospital rather than a doctor’s office.
  • Trauma, especially in childhood, which causes serious, predictable and lifelong health problems as documented clearly through what is called the Adverse Childhood Experiences (ACE) study.

The reasons for understanding how trauma survivors and super utilizers are often one in the same will be shown.

These two groups both receive healthcare which is often ineffective and expensive. Up until now, the needs of people in both groups, and the experience many super utilizers have had with traumatic stress, have not been well understood, treated or managed.

It is a costly mistake causing human suffering for patients while also driving up healthcare costs. Opportunities exist to simultaneously increase care and reduce costs.

What is a Super Utilizer?

There is no single definition for what is commonly referred to as a super utilizer (also called “high utilizer,” “frequent flier” or “super user”) of the healthcare system.

Super utilizers (SU’s from hereon) are people with chronic and/or complex health issues who seek treatment at hospital emergency departments. Often SU’s get treatment in crisis when earlier treatment would have been more effective and less costly. SU’s do not always follow prescribed treatments, follow-up visits, health monitoring or use medications as directed.

Emergency department visits are often for non life-threatening issues which might be treated more easily and effectively when addressed earlier. In addition, SU’s usually have one or more behavioral health challenges in addition to a chronic illness.

SU’s are often poor and many are insured by Medicare or Medicaid, however this is not always the case.

SU’s are considered non-compliant by many medical professionals who believe they fail to use the system well. Others say the system is failing SU’s making it too difficult to navigate (make appointments, ask questions, follow up on care, get prescriptions filled or refilled, etc.). Some believe hospitals are even incentivized to treat people in the emergency room rather than the doctor’s office because insurances reimburse at higher rates for this care.

Most understand SU’s as the small percentage of people who use a disproportionately high percentage of health care resources.

In fact, some report that half of all healthcare expenses are spent on 5% of the U.S. population. The other half of healthcare spending is used by the remaining 95%.

The reason SU’s must be understood is two-fold. This group receives frequent and often unsatisfactory care, repeatedly, and at a high price to the healthcare industry.

Some study SU’s in an effort to reduce healthcare costs alone but many are motivated by improving care of high needs patients as well. Plus, a better understanding of the SU population can shine a light on where the healthcare system can improve for all.

People such as Dr. Jeffrey Brenner believe improving care and reducing costs can be achieved simultaneously. He is helping to shape the way we study, gather data, understand, serve and create new policies for SU’s as well as the high costs of failing to do so.

Brenner has a unique perspective because he has experience as a researcher and a family physician. He draws on both in his current role as Executive Director of the Camden Coalition of Healthcare Providers. As recipient of funding from both the Robert Woods Foundation and MacArthur Foundation he examines, explains and challenges the way healthcare costs are spent and how hospitals are used by SU’s. Additionally, he champions the needs of SU’s as well.

But he didn’t start out as an activist or policy maker. Brenner was a frustrated doctor with a family practice in Camden, New Jersey for over a decade. He was working in one of the poorest cities in the nation. Many patients had Medicaid for insurance. He said he was embarrassed by the level of care he was able to provide.

The pay outs for appointments were so low and Brenner was unable to provide good quality care and cover expenses. He literally couldn’t afford to spend the time his patients needed at appointments and keep his clinic doors open. At the time, he said, Medicaid pay outs in his state were among the lowest.

But it didn’t make any sense. The hospitals in Camden were often big, beautiful and in expansion mode.

How could finances be so bad for a doctor in a country with a booming healthcare industry?

He wanted to know how it was possible that 20% of the income in the U.S. could be spent on healthcare and he couldn’t serve the families in Camden who were sick. He was after all providing health care. His business was not booming and it wasn’t because his patients didn’t need his services.

He wanted to understand exactly where the healthcare dollars were going in Camden.

When his practice closed, he had time to do just that. Because he’d been a researcher earlier in his career he knew how to collect and analyze data. In fact, he’d used data collecting and sorting for a police department to see if there were crime “hot spots” – locations where crimes happened most frequently.

What would happen, he wondered, if he applied the data “hot spotting” technique to the healthcare industry to learn what the spending “hot spots” were?

He gathered over 500,000 records from the 98,000 who went to the three hospitals in Camden in one year. The hospitals were Cooper University, Virtua Health and Our Lady of Lourdes.

His findings surprised him and he has been talking about them pretty much non-stop ever since.

What he found was this:

  • 30% of costs generated by 1% of patients
  • 80% of costs generated by 13% of patients
  • 90% of healthcare costs generated by 20% of patients

That was in Camden. So he continued his research nationally and found, That basic rule is true everywhere, if you look at middle class people or at employee groups…The trend holds… The full dataset told an unbelievable story of wasteful, disorganized services…”

He says the healthcare system is set up to serve the average patient but this is a faulty model. The average patient isn’t using an average amount of services.

The main problem, Brenner said is, “We ignore ‘outliers’ instead of focusing on them.” The so-called “outliers” have a huge impact on the entire healthcare system and not only are they expensive, they often aren’t getting treatment that effectively manages their complex, chronic and often co-occurring needs.

He points out that those considered non-complaint are not actually disappearing from the system. They don’t quit using the system, they just don’t use it in the ways prescribed. They don’t use it for prevention and maintenance or office visits but often re-engage during emergency or crisis. This, he says, happens more in emergency rooms and less at doctors’ offices, and it leads to more hospitalizations. The cycle does not get broken or interrupted either but repeats not only with other patients, but frequently with the same patients, some of whom go to the emergency room dozens to hundreds of times a year.

This is all kinds of costly. Especially when a magnifying glass is put upon the reasons emergency departments are used.

In Camden, Brenner found that the ED was used most often for these five reasons.

  1. Head cold
  2. Ear infection
  3. Viral infection
  4. Sore throat
  5. Asthma

He said there were 12,000 Emergency Dept. visits for head colds alone.

“Emergency rooms have tripled in size. Hospitals are getting larger. Acute sides getting bigger and bigger.”

But small care clinics and general care practices are closing or have closed. “Hospital care,” he said, “is big business. The business model of a hospital is the same as airline and hotel, occupancy rates and turnover. It’s a volume based delivery style at hospitals.”

Brenner believes there are “too many hospitals and not enough community-based services.” He believes making it easier for people to access the system could help and that making it easiest for those now called SU’s makes sense. And that would be better for those who practice outside of a hospital emergency department or emergency room as well.

Brenner does not blame SU’s or think they need to be forced to comply better. He thinks we need to understand who they are better and why the often ineffective care is used, repeatedly and at high cost.

He believes it is the system itself that is often too disorganized for people to use well. This is why people don’t do so until there is a crisis even though their health suffers and they will be seen in an emergency department where the charge is $150 or $300 or $800 or $1000 even though most have insurance and could be seen by a primary care doctor.

Brenner said when people are angry or overwhelmed they abandon the management of their health or healthcare until their health problems are more serious. But it would be a mistake to call them “noncompliant” and go no further.

We all know of, live with or love someone with a chronic or complex health issue. It’s easy to understand how hard it is to manage healthcare while sick. And that doing so while poor and battling other social, medical or mental health challenges would be harder.

People are frustrated, overwhelmed and managing more than one chronic or complex physical or behavioral health challenge.

Plus, there are practical issues at play as well. The system itself can inadvertently encourage emergency room use in the way it operates. For example, it’s easier and more convenient for people to use services, like the Emergency Department, even for head colds rather than say go to office visits. Why? The hours.

Emergency departments are open 24/7. Many offices have few or limited non work or school hours. There are many factors.

Brenner believes that a better understanding of super utilizers is the key to improved care and reduced spending.

So what do super utilizers have in common?

It turns out one important thing is stress, traumatic stress specifically and often the kind which occurs during child and adolescent development.

Toxic traumatic stress. (For the complete paper or to work with me, please contact me at (617)962-0036 or cissy_white@comcast.net

2. How Expressive Writing Improves Health (excerpt)

This position paper explores the history of expressive writing explaining who discovered the technique and how. There are documented physical and emotional health benefits to expressive writing which are summarized. Discussion about how often expressive writing is done, if writing should be shared and who benefits most is also included.

History of Expressive Writing

The term expressive writing was coined by James W. Pennebaker, Ph.D. who is currently a professor in the Psychology department at the University of Texas. Pennebaker is author of Opening Up: The Healing Power of Expressing Emotions first published in 1990 and which will be updated and re-released later this year. He’s also co-author with John F. Evans, Ed.D. of Expressive Writing: Words that Heal published in 2014.

Writing in journals or penning letters is not a new practice. In fact, diary keeping has been done for centuries by human beings throughout the world. Many of us have done so occasionally or frequently and most often when upset.

But why? Why do people write when hurt or down? Does writing have measurable health benefits and if so, what writing style is most beneficial? These were the types of questions fueling Pennebaker’s research which began in the 1980’s when Sandra Beall, one of his graduate students announced her intention to do a thesis on the relationship between writing and health. His job was to guide her.Pennebaker and Beall developed a study and worked with volunteers (students).

Group one would write about traumatic experiences and the other write about insignificant or mundane experiences. Additionally, the group writing about trauma was sub-divided into groups writing from three difference perspectives, as follows:

  1. Group one wrote about mundane matters. It would be the only group to do so.
  2. Group two would write about trauma venting emotions only.
  3. Group three relayed only the facts about the trauma(s) experienced.
  4. Group four shared facts and vented emotions about the trauma(s).

That meant there were four groups and student were randomly assigned to be in each one. All groups wrote for fifteen minutes, four days in a row and without regard to spelling, grammar or punctuation. All four wrote quickly and without stopping.

Every student wrote alone and without being identified or using a name so they would be anonymous. In fact, students had the option of never turning in their writing if they chose not to share it and could withdraw from the study at any time without penalty. Not one student withdrew and even that was notable as students don’t always comply with study requirements.

Follow-up was done, in person, with each student at two different times. The first was immediately following the study and the second was done four months later. Students agreed to have their medical records reviewed so Pennebaker and Beall could compare the number of visits for medical care (and reasons) in the three months prior to the study and the three months following for every participant.

In the initial interviews following the fourth day of writing many of the students who wrote about traumatic experiences were upset and cried. They shared how they frequently thought about the topics they wrote about during their 15-minute writing sessions. Though none were required to share their writing most did. Students wrote about parental divorce, the death of loved ones, childhood abuse, past suicide attempts, public humiliation, sexual secrets and drug and alcohol addiction.

Those who wrote about trauma felt sadder than those who wrote about superficial topics. Pennebaker worried that they created a study which caused students to get depressed. No one felt “good” or happy having written about trauma, secrets or hardships.

However, months later, data was gathered and students were interviewed again.

What are the Documented Health Benefits?

Students who wrote about their deepest feelings and details about trauma had a 50% reduction in visits to the health center reporting colds, flus or health problems compared with the other three groups. Prior to writing all four groups had visited health services at the same rate.

In addition, participants reported to Beall and Pennebaker that: “Writing about their deepest thoughts and feelings about traumas resulted in improved moods, more positive outlook, and greater physical health.” The participants felt good about having written and the insights and changes they experienced as a result.

Pennebaker did not intend to create a new form of writing therapy. He was a social scientist not a therapist. What he was most interested in was understanding why and how this combination of writing in detail, with both feeling and factual details was most beneficial.

So he set out to do another study and teamed up with an interesting research duo. Janice K. Kiecolt-Glaser was a clinical psychologist and her immunologist husband, Ronald Glaser worked at Ohio State University. They had been studying the negative health consequences of trauma and hardship and even mood states such as loneliness by measuring the action of T-lymphocytes. They studied the “relaxation response” showing it improved health and immune system functioning in the elderly long before the public understood the benefits of mindfulness-based health practices.

With their help, Pennebaker could explore the immune system response of study participants. He could compare it in those doing expressive writing with emotion and feeling to those writing with only emotion or feeling as well as to the group writing about superficial matters.

Again, the group writing expressively (thoughts and feelings) showed the most “heightened immune function” compared with those who wrote about superficial events. The improvements were highest immediately following the study but remained six weeks. And, sicknesses and visits to the health center also decreased again.

The two initial studies were relatively small and done decades ago but they opened up an entire field of inquiry. The studies have been repeated and expanded. Thirty years later Pennebaker is still working in the field. Many others, however, are doing similar research. Last month I contacted Pennebaker to make sure there were no new advances on the horizon I didn’t know about. He said that there are so many new studies coming out now that one need only use Google Scholar to search “expressive writing” to find them but that he can’t even keep up with them all and this is his field of expertise!

The public is becoming more and more aware of the health benefits of writing. Earlier this year, the New York Times ran an article entitled “Writing Your Way to Happiness” by Tara Parker-Pope which reported:

“The scientific research on the benefits of so-called expressive writing is surprisingly vast. Studies have shown that writing about oneself and personal experiences can improve mood disorders, help reduce symptoms among cancer patients, improve a person’s health after a heart attack, reduce doctor visits and even boost memory.”

In addition, Louise DeSalvo who is a researcher, trauma survivor and author of several memoirs also summarizes much of the research about expressive writing in her book Writing as a Way of Healing:How Telling Our Stories Transforms Our Lives. DeSalvo wrote:

“Other experiments established that people who linked traumatic events and feelings in this way had “T Lymphocytes (that) were more ‘energetic’ than the control group.” Their bodies, then, were more able to fight infection (having greater antibody response to Epstein-Barr virus, and hepatitis-B vaccination, for which they were tested) than before writing. Their heart rates lowered. Other tests showed too, that they were in a more relaxed physiological state.

…Writing thoughtfully and emotionally about traumatic experiences, rather than writing about superficial topics or venting feeling or simply describing what happens, seems to improve our immune system.” `

She also wrote:

“Further experiments with other groups of students and people in distress (laid off from jobs; people whose spouses had died tragically; people with illnesses) showed that substantial behavioral changes are also associated with this kind of writing. Students’ grades improve. People get new jobs more quickly. Sick people are somewhat healthier; if they are terminally ill, they seem, nonetheless, to be in a state of emotional and spiritual healing – more accepting, secure, serene.”

Expressive writing has great emotional, physical and even spiritual benefits. It helps many people. What’s not exactly clear is why.

How Does Expressive Writing Promote Health?  

Many have relied on writing to “clear the mind,” “lighten the load” or “get thoughts down.” Many people practice expressive writing alone, casually in writing groups or even more formally in therapy. Science can’t yet explain why it improves health, wound healing, sleep, immune function, etc. only that it does. For the complete paper or to work with me, please contact me at (617)962-0036 or cissy_white@comcast.net