How to Get Involved in Pain Research

Tired of waiting for a breakthrough treatment for your chronic pain? Join a clinical trial and be part of the push for progress.

If you are living with chronic pain, you may experience periods of hopelessness. At times, it may seem as though relief from pain will never be in sight. One way to feel that you are taking action and moving forward, however, is to get involved in pain research.

“To do something productive makes you feel better, especially if your pain has made it so that you cannot do a regular day job any longer, which is very frustrating,” says Leslie MacGregor, VMD, PhD, JD, a pain advocate who runs a large neuropathy patient support group. She also works closely with the Patient-Centered Outcomes Research Institute (PCORI), which funds research that provides patients, their caregivers, and clinicians with the information to make healthcare decisions. Recently, Dr. MacGregor co-hosted a Pain 101 Podcast on pain research.

“Becoming involved in research can be very gratifying and give you a sense of purpose,” she says. “It can give you a sense that your pain is not all in vain, and that there is some point to what you are going through.”  

Being part of pain research can not only move scientific understanding of chronic pain forward but may also give you a sense of greater purpose. (iStock Photo)

Ways to Get Involved

Studies are taking place all the time as scientists and medical professionals work to find effective new treatments for a variety of medical conditions—understanding chronic pain and how to treat it is no different. You can be part of a sample study that helps researchers examine and move forward a particular medication, procedure, or mind-body approach forward before it is accessible to the general public.

Keith Rafal, MD, MPH, medical director of the Rehabilitation Hospital of Rhode Island, and founder of Our Heart Speaks (ourheartspeaks.org), a non-profit that supports an international patient stories project, notes that this type of research can be most effective for those with mild, moderate, or severe pain. “There are some experimental treatments that have the potential for real impact on intractable and severe pain conditions,” he explains. “In general, these tend to be more invasive such as surgeries, implanted devices, and injections. Given the current range of options, the greater likelihood for success is with the more mild-to-moderate chronic pain sufferers. It depends on the specific treatment being studied, the chronicity of the condition, and a host of other factors.”

And, Dr. Rafal adds, “The reality with chronic pain management and research is that, often, it is the combination of approaches that works best rather than any one treatment alone. Some of the research protocols have incorporated that reality and offer a combination of options as part of their protocol. For instance, medications may work better when combined with physical therapy and cognitive behavioral approaches.” 

You might also consider Pain Coaching

How to Get Started

If you are interested in becoming involved in research for new medications or treatment techniques for chronic pain conditions, consider a few factors first, advises Dr. Rafal.

Do some digging into who may be running the trial.“There should be a thorough, comprehensive evaluation by a practitioner or team that is empathetic and familiar with all the potential variables that influence the experience of chronic pain,” he says.

If you are weary about pharmaceutical companies, remember that manufacturing companies are not the only players when it comes to research – there are other options. Says Dr. Rafak, “…it depends on the study, but research physicians, clinicians, and academic centers, some supported by NIH grants, in addition to pharma and medical device companies can be involved in the full range of research.” You can do a basic search of both private and public research studies at https://clinicaltrials.gov/

Be aware of the logistics.Every randomized clinical trial should include both a test group—the group of patients that takes the drug or treatment being studied—and a control group, the group of patients that takes a placebo, continues on their regular treatment regimen, or experiences no intervention at all. Participants are typically not told which group they are in, known as a blind or double-blind (even the researchers don’t know) study.

“If you are willing to go in and be in the group that gets no treatment, then that is okay,” says Gurtej Singh, MD, a board-certified Physical Medicine and Rehabilitation physician with additional board certification in Pain Management and Regenerative Medicine for The Centers for Advanced Orthopaedics, which operates across Virginia, Maryland, and Washington, DC.“But if that outcome is not acceptable to you, then you may not be right for a research project. Sometimes, the gains are small and that is just part of the research.”

In addition, look at how the project is structured, the time commitment needed, and whether you would need to travel. It’s a good idea to know in advance what will be involved to know if it’s right for you.

Look for non-pharmacological studies as well. Research into relief for chronic pain isn’t all about medication-based interventions these days, notes Dr. Singh. In addition to drug-based treatments, there are various approaches that de-emphasize the pharmacological benefit, such as working with a pain psychologist, physical therapy, and spinal cord stimulators. Getting involved in research projects looking at these non-pharmacological options to treat chronic pain is an option worth considering, he says.

In addition, notes Dr. Singh, healthcare providers don’t always fully understand why patients have chronic pain, so during a research study, they may be trying to answer very focused questions about the science of chronic pain, for instance, rather than testing a specific drug or procedure. “The patients’ expectations should not be set too high in terms of what the benefit would be for them,” he says.

Recognize that being part of a study isn’t for everyone. Explains Dr. MacGregor, “If you find that your pain is really debilitating…, you may to think about whether you want to get involved in research.” Take your time. Do some physical and mental self-checks. Think about the commitment involved. If you’re not up for it, that’s OK. You may be ready at a later point in your journey, or you may choose to engage in patient advocacy instead.

You could also consider becoming a direct recipient of a newly approved treatment that has already gone through trial. Any such treatment would, of course, be prescribed or administered by your doctor or team of doctors. Your feedback on the new medication or approach, including any noted side effects, would be helpful to not only care teams but also to those researching and developing treatments for chronic pain.

Helpful Resources

If you are interested in getting involved in pain research, here are a few resources to check out.

 

Updated on: 02/13/20
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