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.
