The Importance of Understanding Research

By Janice Reynolds, Guest Columnist

Almost daily we are told that a study shows this or research shows that, a physician makes claims based on research, or the news media blaring “New Study Shows.” 

Even worse, more and more frequently we are seeing providers, government and the media basing their opinions or actions on poor evidence -- or many times the total lack of it.  I have a tee shirt which says: “Show me the evidence and critical thinking.”

It is time for people in pain as well as their advocates to understand research studies and hold accountable those that are cited.

Evaluating research is a little complicated and time consuming, but it is something every medical person needs to do.  More importantly, the media needs to justify their reliance on research and identify that what they are saying is true, rather than something totally lacking in validation and objectivity (which unfortunately is most often the case). 

After all, the media claim to do careful research before doing a story. Politicians should also have accountability for objective truth.

As people living in pain, our arguments and comments are more effective if we show that we know what we're talking about.  It may not change someone's mind if they are opiophobic or dislike and distrust people in pain, but it’s important to try.

I’ve made repeated requests to the Portland Press Herald to give me the citations for their claim that “studies have shown conclusively that opioids not only don’t work for chronic pain but make it worse.” I haven’t changed their minds, but it is ammunition in the battle for actual truth.

These are some of the terms the public and people in pain need to understand:

Correlation and causation: Probably the most important.  Just because something happens at the same time, does not mean one thing “causes” the other.    My husband teaches statistics at a university and the example he uses is when the number of new boat licenses increases the number of manatees being killed. This does not mean boat licenses kill manatees.  This correlation means causation thing is rampant in media stories about pain.

Anecdotes and surveys:  An anecdote is an account not necessarily true or reliable, because it is based on personal experience rather than facts or research.  For every anecdote, there are often many more which tell a totally different story. An example would be: "My son died of an opioid overdose. We have to stop these drugs from killing people." Any death is tragic, but opioids do not in themselves kill people. 

Surveys also rely on someone’s self-reporting.  The one used extensively by the media and politicians is that 3 in every 4 heroin addicts got their start taking prescription opioids. That particular survey relied on addicts to tell the truth, did not not include addicts outside of treatment, and most importunately did not include millions who have taken opioids for pain and never even touched heroin.  Surveys and anecdotes are worthless as evidence.   

Case studies:  These are things that happened to a person, group or situation at a single time and/or place; i.e. a case history.  The CDC makes use of case studies to “prove” in their seminars the correctness of their opioid guidelines.  Case studies are of interest, but are not valid evidence for the same reasons anecdotes are not.

Data mining: This is the process of collecting, searching through, and analyzing a database to discover patterns or relationships. In our case, it usually means they have gone through death certificates, insurance records and the like.  Once again, this is not a source of evidence as there is no way to verify the validity of the data, as well as other confounding factors.  Data mining is the CDC’s favorite method and it has been shown to be highly inaccurate. It does not have a place in medicine, except to develop insights and lead to actual research.

Statistics: These by themselves do not mean much. Researchers need to use the appropriate statistical analyses before publishing them.  Medical providers, media and politicians need to acknowledge what analysis method was used and what the outcomes were.

Qualitative vs quantitative: Qualitative research gathers information that is not in numerical form. For example, diary accounts, questionnaires, case studies and anecdotal accounts are used to gain an understanding of underlying reasons, opinions and motivations. Qualitative data is typically descriptive data and as such is harder to analyze than quantitative data. It can never be “proof.”

Quantitative research looks at numbers, it is the “hard” science. Quantitative research is used to quantify the problem by way of generating numerical data that can be transformed into useable statistics that can be evaluated.

Objectivity: Objectivity means being aware and honest about how one's beliefs, values and biases affect the research process. This also applies to the reviewing, reporting, and selection of research.  The media especially lacks objectivity in their reporting of all issues related to people in pain and the “opioid addiction epidemic”.

Method:  How the study was done; meta-analysis, random controlled trials, non-random controlled trials, survey, cohort or case controlled study, or even expert opinion. The latter is only acceptable when no other research exists on the subject.

Sampling: The number of participants and who they were. A small number has a lower strength of evidence.  My favorite example of a “who” was a study done which claimed to show analgesics caused people to be homicidal.  Their sampling took place in a prison where all the participants were murderers!  Doesn’t take a rocket scientist to figure out this was biased.

Strength of evidence: This is probably the most important term when it comes to research.  There are many different tables used (easy to Google) that show a hierarchy of what is strong evidence, what is weak and what is non-existent.  Even the CDC recognized the evidence for their opioid guidelines was weak to non-existent. Most studies on the opioid epidemic or people in pain are inherently weak because the evidence is so poor.  

Proof:  Research seldom ever provides “proof.”  If multiple studies come up with the same results, then some might call it proof; however it is safer to say “likely.”  When talking about pain, medications, interventions or even addiction, the word “proof” should be off the docket.

Critical thinking: Critical thinking is the identification and evaluation of evidence to guide decision making. Another definition is making reasoned judgments that are logical and well thought out, a way of thinking in which you don't simply accept all arguments and conclusions you are exposed to, but rather question such arguments and conclusions. 

Those who are prejudiced and biased against people in pain or opiophobic rarely use any critical thinking skills at all.  In fact, after a comment I had made on a newspaper article, someone assassinated my character by saying my head was filled with mashed potatoes and I lacked any critical thinking skills whatsoever.  There was more and it was pretty funny.  This unfortunately is characteristic of the media, politicians and general public. No matter what we say or how truthful our comments, they will not hear. 

Evidence based: This means looking at best available clinical evidence from methodical research.  The word term is thrown around lightly and unless you have the actual “evidence” to back it up, it is meaningless. 

Several years ago, I was part of the original Pain PEP (Putting Evidence into Practice) team for the Oncology Nursing Society. We studied pharmaceutical interventions for nociceptor and neuropathic pain in the adult cancer patients. It took us two years to evaluate recent guidelines and research studies, and to write our guidelines based on the strength of the evidence. If you say something is “evidence based,” be prepared to show it.

One last comment on the issue of research and pain management: There are integral difficulties in pain research as people vary in their reaction to pain, the cause of their pain, and how they respond to treatment. Any research that uses the term “chronic pain” is already working with a false premise because there are so many different types of pain that are persistent.  Any research that looks at a “class” of medication such as opioids or antidepressants is also employing a false basis as well.

Pain management is an art and a science, and any attempts to standardize it will only harm people in pain.  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Wear, Tear & Care: Media Hysteria and the Opioid Crisis

By J.W. Kain, Columnist

I recently received this email from a family member:

Hi Jen,

I was listening to a thing on pain medication and why prescription meds are so dangerous. They turn the receptors off in the brain and the person forgets to breathe.  That part is a totally separate thing from the pain. Dr. Sanjay Gupta was on talking about it. I think that is a very valid argument about overuse of pain meds.

For example, Prince had very valid issues to use the meds and also lived a very clean life style. If he overused, it goes to follow that someone who doesn't lead a clean lifestyle is in more danger. It's not the meds as much as the brain receptors. The breathing part is scary. So I'm not such an advocate anymore.....unless you can tell me this isn't true and why he would say that.

I love you and don't want anything to happen to you. Xoxoxox

I got mad after reading that, even though I knew she was coming from a place of love and fear. It didn't take long for me to calm down because I saw the bigger issue.

First off? Yes, those claims are true. They are also massively simplified. Heavy pain medications slow down or impair bodily functions. You’ve seen those opioid-induced constipation commercials. That is why only a select few of the chronic pain club gets high-voltage pills for daily life as opposed to post-surgical pain.

Here’s a great quote from WBUR’s interview with Dr. Howard Fields that explains the difference between addiction and dependence, the latter being what most chronic pain patients experience:

“Addiction really gets to the issue of compulsive overuse of a drug so that it becomes the dominant thing in your life. If you are going to your physician once a month and getting your prescription refilled and you are able to lead a normal life by taking a pill maybe three or four times a day, you’re not addicted.

But if you’re spending all your time in the search of a drug, or trying to get the money to buy that drug, or stealing from your friends, or going around in other people’s medicine cabinets looking for opioids, then you’re addicted.”

My view of this increasingly volatile situation is that opioids — which the majority of pain patients use responsibly — cannot be banned without another medical intervention in place. Yet some pain management clinics are declining to prescribe opioids.

So what’s fueling this explosion of insanity?

Welcome to the opioid crisis media extravaganza. There is currently a media blitz surrounding the national opioid crisis:

  • A doctor in Buffalo was indicted and closed his practice, leaving thousands of his patients without access to pain medication.
  • A California doctor was convicted of murder for writing too many prescriptions (and to be fair, that case was pretty shady).
  • The late pop icon Prince died after allegedly overdosing on opioids (though few talk about his chronic and debilitating pain, a condition that is “criminally under-treated”).

Many, many people have overdosed and/or died. That is undeniable and is certainly a problem. But the national reaction has not been the appropriate response. The CDC guidelines that discourage doctors from prescribing opioids gloss over pain patients like we don’t exist and only add to our desperation. A former FDA commissioner even slanders us.

So many patients are doing everything right — exercise, strength training, meditation, deep breathing, over-the-counter pills, medical marijuana, aqua therapy, physical therapy, chiropractic work, Reiki, crystals, and anything they see that makes a vague promise to help.

Pain can drive sufferers to extreme lengths, be it suicide or illegal drugs like heroin. Patients are far more likely to turn to street drugs if there is no access to proper pain medication. Or, you know, when pharmaceutical companies outright lie about the addictive natures of their pills.

It's coming out in the news more steadily now, but the rumblings have been around for several years. The opioid crisis may have started partly because OxyContin, “a chemical cousin of heroin,” had addictive qualities and yet was prescribed with abandon.

Purdue Pharma reps went to doctors and told them their pill wasn’t addictive and lasted for twelve straight hours!

In reality, OxyContin presents a serious end-of-dose failure. This is when a drug says it will quiet pain for twelve hours, but in reality only works for eight. This causes patients to take additional pills or stronger ones, which can lead to overdose and addiction.

A four-hour gap? What did Purdue expect to happen?

The knee-jerk reaction to the crisis is to limit the prescriptions of opioids. What does this do to pain patients? It leaves many of us without access to pain management methods that the majority of us have not abused.

Doctors tell sobbing patients that long-term opioids are usually not the answer. But they are the answer for many patients who literally have no other options beside being bed-bound or dead. Those patients are now in grave danger of being driven to extremes. Like that one awful guy who ruins things for everyone else, there have been patients who’ve abused their health care regimens. Sometimes they can’t even help it, like so many of those OxyContin patients who were lied to.

Many of us have to sign pain contracts before we can even dream of receiving opioid prescriptions. These state that our pills are doled out in certain quantities over a set period of time and that they cannot be replaced, supplanted, or in any way refilled for one month. If we lose them, if they get stolen or if the world explodes, we cannot get more.

We have to get new prescriptions in writing every month. The hard copies have to be delivered to the pharmacy. Our driver's licenses must be presented to the pharmacist so they can track our pill usage. Then, and only then, do we receive our prescriptions.

Tell me: Why on earth would we jeopardize that? Most of us are responsible. We don't overuse what we have. We know we can't, or we’re cut off.

A lot of people say, “You’ll end up hooked." The medication will change our brains to make us need, need, need, and we will do anything to fill that need.

And yet, both I and other patients in my support groups, online chats, and frequent fliers at the doctor’s office time our prescriptions and take them exactly when due. We pair that with every other over-the-counter intervention we can think of, like wearables, pain patches, creams, and braces. We can’t rely on opioids because they might disappear at any moment.

The current approach to battling the opioid crisis lumps pain patients with true addicts, and it skews the statistics. I’m not naïve enough to say that some addicts didn’t start as pain patients. I know some did. But in my entire decade-plus in the medical system, I personally know of only one person who started on pain medication and ended up in rehab. I know a few more online, but I can count them on one hand.

My fundamental message here is that unless the proper education is provided, even your biggest supporters — your family, your friends, your colleagues — might react to the media hysteria without doing research that contextualizes the data. They might read a tweet or a headline and react out of fear. Stories will keep being conflated.

They might even send an email like the one sent to me. They only mean the best, but it adds to the collective national fear that is leaving thousands upon thousands of pain patients without the treatment we need.

Prohibition didn’t work in the 1920s. This version of Prohibition isn’t going to work either. The sooner we as a society come to that conclusion, the better.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. on her blog, Wear, Tear, & Care.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Media Coverage of Pain Meds Often Unfair

By Emily Ullrich, Guest Columnist

As a chronic pain patient, I see a number of damaging political and social obstacles being added to the already desperate, often isolated and depressed lives of chronic pain patients.

Those of us who live with constant pain are too often disregarded by friends and family, who become frustrated that we haven’t gotten better, and/or begin to suspect that we are feigning or exaggerating our illness. In addition, doctors often label chronic pain patients as “drug seekers” and “malingerers.” Patients who need their help the most are often thrown by the wayside.

On top of these devastating blows, chronic pain patients face political, medical, social, and media scrutiny, and are often shamed out of seeking or pressing for the help they so desperately need. Some glaring mistakes are being reported in the media about drug use, overdose, and abuse. These mistakes are being repeated on a national level, and have created a culture of misinformation and stigma.

There is no doubt that addiction and overdose are serious issues which deserve our attention, but the media is manipulating the minds of consumers about the origin and nature of these issues, beginning with the subtle engineering and general processing of words. By that I mean the simple diction and placement of words used in articles regarding pain medication and illegal drugs.

For example, while an article discussing diabetes or blood pressure medication will refer to them as “medicine,” an article about pain medications will often refer to them as “drugs.” That places a negative connotation on the reader's perception of ALL pain medications as being categorically the same as street drugs.

I also read articles on a daily basis which pair pain medications and illegal drugs together in broad general statements, implying that the two are synonymous. In addition, the terms and implications about the use and abuse of pain medications are being used interchangeably; again reiterating in the minds of readers that if one takes pain medications, he or she is an addict, and that by simply taking pain medications he or she is abusing them.

These implications are untrue, unfair, and misrepresent chronic pain patients, misinform the public, and create unnecessary fear and sensationalism.

Like thousands of other chronically ill, legitimate pain patients in Kentucky and throughout the United States, I have been taking pain medication for many years. Without it, I cannot get out of bed and function. I have never once been "high" on them, and I've NEVER considered heroin use.

The real correlation between the two is that pain patients are being forced to fend for themselves and find relief on the streets with drugs like heroin. The government has scared doctors out of doing their jobs when it comes to addressing pain, and because of the media's continued manipulation and sensationalism in regard to pain medication, society now shames pain patients out of seeking medications they need.

There is an essential truth being conveniently omitted from most current articles regarding pain medication, street drugs and overdose, and that is that there is a direct correlation to the increase in heroin use and the implementation of growing numbers of laws that restrict prescription pain medications.

People are suffering, but instead of being treated with compassion, they are being treated like criminals and worthless members of society. Legitimate pain patients deserve access to the medications which allow them to operate, and doctors should not be afraid to help them. Patients should also not be made to feel they are illicit members of society for seeking a remedy to their medical conditions.

It is time that the media clearly differentiate between addicts who abuse pain medication and legitimate pain patients who use their medications as directed. Also, lines between pain medication use and the use of street drugs must be drawn.

Most importantly, politicians across the country must accept their role in the influx of heroin usage, and its direct correlation to the “War on Drugs.” Laws that limit the availability of pain medication are not based on truth (according to the U.S. National Library of Medicine, the real rate of addiction among chronic pain patients is a mere 3.27%), but are adjusted to fit the motives of politicians and scare the public.

Lastly, as chronic pain patients we must ensure that our voices are heard. We must educate and inform others and, most of all, demand our human right to adequate pain control.

Emily Ullrich suffers from CRPS/RSD, Sphincter of Oddi Dysfunction/Papillary stenosis, carpal tunnel syndrome, endometriosis, chronic gastritis, Interstitial Cystitis, uterine fibroid tumors, migraines, fibromyalgia, osteoarthritis, Periodic Limb Movement Disorder (PLMD), Restless Leg Syndrome (RLS), Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and IBS.

Emily is a writer, artist, filmmaker, activist, and has even been an occasional stand-up comedian. She now focuses mainly on pain patient advocacy as a delegate for Power of Pain Foundation, as she is able.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Patients Should Come First

By Janice Reynolds, Guest Columnist

In the media, the persistent pain patient should always come first -- before the stories of addiction, overdoses and the inferences of poorly done studies linking the two with pain treatment. 

Most important is the professional relationship between provider and pain patient.  There needs to be therapeutic discussion between the two as to the nature of the pain, how it affects the person’s life, as well as what’s been tried and worked, and what has not worked. The goal should be a multimodal pain plan which works for the patient as well as being affordable.

The risk of addiction should be a concern, but not at the forefront.  Those seeing addiction as an “epidemic” linked with pain management have no valid research on which to base their concerns, only the media and addiction specialist hysteria. 

Unfortunately, many professionals as well as the general public are not only influenced by the media but learn from it as well. The yellow press of today is comprised of articles full of lies, half-truths, and prejudice.  This behavior is seen in professional articles as well.  Many times the basis for an article is some piece of research which is interpreted by the authors to conform to their point of view.

Not all research gives us proof or even a good indication of the truth.  Some studies are flawed and others are inherently bad.  An example of this is the CDC’s opioid overdose study, which is often cited to make the claim that over 16,000 American die every year from opioid overdoses. 

The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process. Did the patient die from lung cancer or opioid toxicity?  Sometimes the latter is entered as the cause of death when it is not the case.  

Unfortunately this study is quoted by many.  If you say a tale often enough, it becomes a version of the truth.

Many times reporters get their information from questionable sources.  Their experts are frequently addiction doctors and occasionally others who are experts in their own minds.  Someone who is expert in pain management is seldom interviewed or quoted and when they are, their message is greatly outweighed by the others or taken out of context.  Selectively presenting “expert” testimony is at best a half truth. 

Reporters need to learn how to read and understand studies, especially if they are going to quote them. In order to know how valid a study is, the size, method, and strength of evidence all needs to be evaluated as well as any weaknesses.  Is this ever done by the media?

There are many fictions. Sometimes pharmaceutical companies are charged with trying to increase their sales by marketing pain medication.  One article said the Institute of Medicine’s report on chronic pain was influenced by the pharmaceutical companies. Another article claimed “our pain was greatly exaggerated” and severe pain really not that common. An article even stated hydromorphone was a long acting form of morphine, an outright untruth but never corrected. There are way too many fabrications to repeat.

One of the biggest challenges for people with persistent pain is the linking of addiction with treatment for pain. Not only the media does it, but even medical organizations geared towards pain such as PainWeek do it.  Yet a Cochrane Review on the available research shows only 4 to 5 percent of people taking opioids for pain become addicted, much less than the 17% in the general population who have addictive personalities. 

I realize there is an irrational fear of addiction (e.g. as a nurse, it was not unusual to have family members of a dying patient worried the patient would become addicted!), but the media should be educating more about pain, pain management, and the true reality of addiction rather than the dangers of addiction and the so-called “epidemic.”

In 1968 Margo McCaffery wrote, “Pain is what the person says it is, existing when he says it does.”  She was heavily ridiculed at the time.  Where Margo once said she would rather be fooled by ten people than let even one person suffer with pain, so many now would rather have 1,000 people suffer with pain than let one person fool them. 

In so many places now, the quality of pain care is measured by the number of prescriptions for opioids written (less is better). Compassion is a forgotten term. I heard a physician recently say only patients dying with cancer should be allowed opioids.

We need to see more accountability by providers and the media for understanding pain, learning about persistent pain syndromes, and about interventions both pharmaceutical and non-pharmaceutical.  There has to be education that not all interventions work the same for everyone; some work better, others may not work at all.

They need to learn if an intervention is affordable or doable. Some medications and many non-pharmacological interventions are not covered by insurance or covered minimally (6 physical therapy treatments a year won’t cut it), making effective therapies too expensive to pay out of pocket. 

Providers continue to get minimal education on persistent pain and treatment options in school.  But when it comes to continuing education they are required to get education on Risk Evaluation and Mitigation Strategies (REMS) for opioids, as well as identifying the addict, yet little about pain treatment.  This lack of edification hinders providers’ ability to care for patients and makes the provider more susceptible to the myths related to addiction.

Providers and the media need to realize the person with persistent pain “owns” their pain. They alone know what it is like, how severe it is, what it prevents them from doing, and most importantly, what works for them and what doesn’t. 

Ethics demand that persistent pain be treated. It is a human right.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.