While working in Ghana, one of my first reactions to the largest “slum” in the country was that I could not be one of those researchers who would take research data from the community and then leave the community. I wanted to help. But I did not want to help in a paternalistic way. I wanted to help the well being of the community in a way that responded to what community residents identified as being their big health problems. I formed a team of very talented Ghanaians, Americans, and Norwegians to try and respond to this challenge–one involving poverty, deprivation, exploitation, environmental contamination, infectious disease, political discrimination, and many other challenges. Unfortunately we ultimately did not succeed, or succeeded in only a very small way, and there are big lessons to be learned from that. I hope to write about some of those in coming weeks. But this is about something else.
Much of my work in the past few years has been about pain and pain treatment. With changing politics, and changing dominant notions of what constitutes “good pain care,” which excludes opioids for many reasons–many of which are ideological and frankly dogmatic, an increasing number of people who have been on stable regimens of opioids have been rapidly tapered off of them and have been offered nothing as a substitute. The problem is that we do not know how many people like this there are, or what has become of them, or how well they are doing psychologically, or how well they are “functioning”, or whether their lives have taken a turn for the worse, or for the better. There are no data sources that allow us to do that.
Yet there are stories. Some derisively call them anecdotes, but there are stories that I hear through social media and interviews, and those stories are stories of suffering. For some, new guidelines promulgated by the CDC, admittedly to minimize potentially terrible consequences of opioid overdoses, have not been kind. Many of these individuals feel abandoned and voiceless.
This poses a challenge. It does nobody good to have populations abandoned under such conditions. At the very least, people need to have adequate and dignified access to multidisciplinary pain clinics, in which treatment for chronic pain is approached from many angles at once: general medicine, physical therapy, physical medicine and rehabilitation, psychology and psychiatry, neurology, anesthesiology, and so called integrative medicine, just to name a few, all within a framework merging compassion and technical expertise. The first of these was at my home institution: the University of Washington, begun by a visionary group of people over 50 years ago. Data show that this model was the best one for improving peoples’ lives in terms of their levels of happiness, self rated functioning, well being, and other metrics. But unfortunately, the health care environment eventually caused many of these clinics to close. They began losing money. And now there are only 200 left to serve the entire country.
Pain is the most common reason for primary health care visits, and pain is the most prevalent health care condition both in the US and globally. We cannot just abandon people by tapering their opioids and in a condemnatory way leaving them to fend for themselves. as though they had asked either to suffer from chronic pain, or to be on opioids.
I decided, therefore, to try something. I remembered what we tried to do in Ghana. Now I am asking people on Twitter and elsewhere: “in my research, how can I help you? What questions can I ask? What needs to be known? What can I find out?” I have that freedom.
Maybe I can make a difference, and spur others to as well. What better way is there to begin than by asking people themselves to help define their own problems?