The Opioid Epidemic: Collecting Now for Future Research

By Susan L. Speaker and Christie Moffatt ~

In October 2017, the U.S. Department of Health and Human Services declared the current opioid epidemic a “public health emergency,” and the NLM Web Collecting and Archiving Working Group began to identify content on the web to archive in support of future research.  The National Library of Medicine collects and archives web content documenting current topics in health and medicine in line with the Library’s Collection Development Manual, including on addiction, public health, and health policy, and how our knowledge, experiences, and understandings of these topics evolve over time.  Portions of the NLM Opioid Epidemic web archive are now publicly available.

Drug addiction, and periodic outbreaks of damaging drug use, have a long history in the United States, starting with the excessive alcohol use in the 1800s that gave rise to the Prohibition movement. Heavy drug and alcohol use, and the medical and social consequences thereof (crime, violence, poverty, disability, death, e.g.) have generated both laws and enforcement agencies to control the drug-taking and drug selling, and spurred many efforts to understand what causes addiction, and how it might be prevented or cured. The legal, medical, and research responses to drug “epidemics” have always developed within particular cultural, scientific, and political contexts. How drug problems are framed has depended on who is using the drugs, what is known about the drugs, whether the drug use is within or outside a medical relationship, and so on. Historians seeking to understand the “drug problems” of any era need to explore a wide range of sources; ideally, these would include legislative and policy records, criminal justice documents, published medical and public health research, especially in addiction diagnosis and treatment, newspapers and other periodical publications, along with film and television coverage; and perspectives from addicts, families, and communities. Traditionally, historians have had easier access to print documents than to other media, and records of the addicts’ experiences have been scarce.

Screenshot of the Facing Addiction Twitter page at 11.8K followers and 3,614 tweets.

The current opioid epidemic grew from an unfortunate convergence of broader prescribing practices in pain treatment, intensive pharmaceutical industry promotion of opioid drugs, the development of new, efficient networks for heroin distribution, greater availability of highly pure heroin and more potent opioids such as fentanyl, and economic downturns. It has much in common with earlier epidemics, but differs in several ways, particularly the demographics (many users are white and don’t live in large cities) and the shocking numbers of overdose deaths (more than 50,000 in 2015). It is also different because, while it is being chronicled in digital versions of traditional document sources, much of the communications about the current epidemic are “born-digital” web and social media,  and reflect new strategies for conducting scientific research, conveying health information, and sharing perspectives, all from a broader diversity of individuals and organizations in expressions easily (and often only) shared on the web, including tweets, blogs, music, art, and poetry.   It is hard to imagine future historians researching the current opioid epidemic without access to the web and social media resources of this time.

Screenshot of the National Institute on Drug Abuse 2017 blog article titled "Mobilizing Citizen Science to Address the Overdose Epidemic."

Thus, when NLM began collecting web content about the current opioid epidemic, we knew we would have to select broadly, even if we wished to limit our scope to mainly medical and public health aspects. We chose to focus on several topic areas that we believed would be of interest to future researchers wanting to understand its history: responses of the medical and public health communities; responses of the addiction research community; responses from policy makers, policy reformers, and the criminal justice system; the experiences of first responders, including police officers; the experiences of the addicts, their families, and communities; ethical and moral dimensions of the problem (such as the stigma of addiction); and “private sector” responses, e.g. addiction treatment centers or pharmacies that supply naloxone to reverse overdoses.

We found a wealth of information on federal government sites – DHHS, NIH, NIDA, CDC, and SAMHSA—and much at state and local government sites as well. These include reference information about the various opioid drugs, their effects and dangers, resources for professionals and non-professionals, and information about policy discussions and policy positions as they evolve.  A number of communities are now participating in the Opioid Mapping Initiative to create public health maps of opiate-related deaths at the county level. The Crisis Next Door site, by the White House Office of National Drug Control Policy encourages Americans to share their stories of addiction.

Screenshot of the NIH Heal Initiative website.

We also selected web content from addiction research and treatment professionals generated for the public and on their efforts to re-think treatment guidelines; news and information documenting new strategies in the criminal justice system for getting addicts off their drugs and into treatment, including experimental “drug courts;” as well as the changing work of police officers and EMTs, who in some areas need to resuscitate overdosed people daily, and risk exposure to highly potent fentanyl when they respond to calls.

Screenshot of the start of a blog post titled "The EMT Who Sees the Opiod Crisis Firsthand."

Enabled by social media, addicts are telling their own stories and sharing their experiences as never before. We discovered many first-person accounts, as well as projects to raise awareness of addiction through the arts—blogs, websites, photos, videos, songs, artwork, poetry, and more. Resources like these were rare or not available at all to historians looking at earlier drug epidemics. Likewise, the experiences of addicts’ families and their communities are well-documented. Families and friends have produced a lot of online content, often as memorials to addicts who have died, or records of the struggles to keep them alive. The economic fallout of addiction—unemployment, more dependence on social services, etc.—and the break-up of families (including children placed in foster care) are also documented.

NLM will continue to develop, review, describe, and add content to the Opioid Epidemic web archive, and welcomes recommendations for additional content to include or aspects to consider.  For more information about NLM’s Web collecting efforts, please visit https://www.nlm.nih.gov/webcollecting/.

Susan Speaker, PhD, is Historian for the Digital Manuscripts Program of the History of Medicine Division at the National Library of Medicine.

Christie Moffatt is Manager of the Digital Manuscripts Program in the History of Medicine Division at the National Library of Medicine and Chair of the NLM Web Collecting and Archiving Working Group.

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