Mobilizing Citizen Science to Address the Overdose Epidemic

Illustration of crowdsourcing©istockphoto/chombosan

In the terrorist attack in New York City on October 31, citizens on the scene shared information and pictures in real time via their smartphones, using social media apps like Snapchat. Snapchat recently introduced a location-sharing feature called Snap Maps, which was also used during the Las Vegas shooting, the Mexico City earthquake, and the hurricanes that devastated the Caribbean and some US cities. Could existing social media or new, built-for-purpose apps be used to attack the opioid problem? It is an area where additional research and partnerships with technology startups could potentially make a big impact.

Social media and crowdsourcing apps could be particularly useful for gathering and sharing information in real time about overdoses and using that information to prevent overdose deaths, thereby translating “citizen science” into “citizen prevention.” In October, 2016, NIDA partnered with the FDA and SAMHSA in a competition to develop an app that would use a crowdsourcing approach to facilitate access to naloxone during opioid overdoses. The winning entry (out of 45 submissions) was an app called “OD Help” that will be developed by a Venice, California startup called Team Pwrdby. OD Help will link potential opioid overdose victims with a network of naloxone carriers; it will give instruction in administering the medication; and it can optionally be interfaced with a breathing monitor to detect signs of an opioid overdose and automatically alert the network.

Crowdsourcing apps could potentially be used to facilitate access to evidence based care in specific regions of the country by sharing information about treatment capacity, waiting lists, and available beds in treatment centers. They could also help opioid-addicted patients in treatment, by enabling them to share their withdrawal experiences, ease fears, and offer suggestions. Families could also share ideas for encouraging loved ones to seek treatment.

Crowdsourcing capabilities like this might also augment mobile health (or mHealth) tools being developed as treatment and recovery aids. One mobile app, the Addiction Comprehensive Health Enhancement Support System (ACHESS) tool, developed with NIH support, utilizes GPS to warn users recovering from alcohol addiction when they are near locations that may be personal triggers for alcohol use; but it can also link users to other ACHESS users via text messaging or to preapproved family members, friends, or peers for help, thereby bringing the power of crowdsourcing to recovery support.

Crowdsourcing is already beginning to change the face of public health. Since 2011 a participatory disease surveillance system called Flu Near You has collected reports of flu-like symptoms encountered by volunteer users via its Website, Facebook, or a mobile app. Similar tools are being used to crowdsource information on food-borne illnesses, toxic waste hazards, and other health threats. They could readily be applied to monitor drug overdoses.

The NIDA-funded National Drug Early Warning System (NDEWS) already crowdsources emerging drug trends from its nationwide network of researchers, such as regional spikes in overdose deaths or emergency department admissions caused by particularly dangerous batches of heroin or counterfeit pills. If augmented with smartphone technology, this information could be more readily used to warn the public and share with public health authorities so that resources could be quickly mobilized to prevent further deaths in an area where a pocket is detected.  Such information could be a boon to implementation research by allowing researchers to determine if a prevention or treatment intervention or a new model for delivery of care was successful in achieving its goals.

The Office of National Drug Control Policy (ONDCP) funded the Baltimore/Washington High Intensity Drug Trafficking Area (HIDTA) to develop an app for first responders and emergency personnel called the Overdose Detection Mapping Application Program (ODMAP). Data gathered through this system can be used to identify localized spikes in overdoses over a 24-hour period, enabling a public health and safety response to be swiftly mobilized. Additionally, the app enables users to enter how many administrations of naloxone were used (if any) and whether the overdose proved fatal, which in turn can help identify areas where more potent opioids or mixed drugs might be responsible for the naloxone failure.

There are obvious issues of privacy protection and bystander legal protection, among others, that will need to be addressed in developing crowdsourcing apps. But we should not allow the inevitable challenges in this relatively unexplored domain dissuade us from studying the possibilities. If we are going to end the opioid overdose epidemic we need “out of the box” thinking, and must avail ourselves of the new crowdsourcing possibilities smartphones and social media apps are making possible.

Dr. Nora Volkow, Director

Here I highlight important work being done at NIDA and other news related to the science of drug use and addiction.

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 Good Idea

Fascinating! Let's tackle this crisis any which way we can.

I occasionally encounter panhandlers who are addicted to heroin. All possess a nice,friendly disposition, and are often reasonably educated. But their lives are sadly dominated by addiction.

Last year I encountered a 23 year old woman panhandler. I talked to her to hear her story while an acquaintance of hers, probably her drug supplier, stood nearby.Very candidly she explained she was close to getting a college degree, but unfortunately got lured into the world of drugs, heroin, and was now struggling to pay bills. It all started rather innocuously. She was distraught because of her own dysfunctional, one-parent family. A friend offered her some pills to feel better emotionally. She used more pills and more drugs, and eventually heroin. She was also just out of jail for a drug charge.

One possibility is maybe there could be collaboration between the judicial system where substance abuse problems will be noted, and perhaps rehab programs could connect and intervene if help is wanted?

Regarding crowdsourcing, how do you help this young woman, what can I do? I have my cell phone, she did offer her name and home town, etc. So wouldn't it be nice to make a phone call to some rehab agency that would immediately respond and offer her help? I bet she would have accepted it.

All so saddening because I know otherwise she's likely doomed to a life of misery.

 Opioid withdrawl

All the "brains" in this drug crisis talk about withdrawl and saving lives. They tout Saboxone as the miracle cure.
But, this leads one to another addiction, as bad as the opoid. There are better and safer and non addictive remedies to this problem. Those in charge should start to think and act "out of the box" Pure science is not the answer

 Interesting concept

Tackling the opioid crisis is not an easy task. It requires discussion that may evoke uncomfortable feelings in some, and anger in others. Nonetheless, the discussion is essential. With increasing numbers of overdoses and deaths, the severity of this problem requires innovative thinking.

The use of social media has the ability to reach out to millions of people worldwide. This app can provide a basis for discussion about the problem with a variety of perspectives. Members of the international community could provide input about different treatment options, teaching, or communication techniques when managing the opioid addicted patient. In a separate forum, opioid users can share their experiences, and provide tips for those who are just beginning recovery. Someone recovering from opioids in Europe can connect to someone in the United States and use this as a source of support that is available 24/7 in their pocket. The opportunities available that can be beneficial to opioid recovery and ending the opioid crisis, are endless.

When figuring out strategies to resolve the opioid crisis, it is important to talk about the uninsured or low-income populations that are plagued with addiction to opioids. How can we do more for these patients? Although this app could provide the information to get help, they may not be able to afford rehab.

There are a plethora of complications that surround the opioid crisis. Creating an app and allowing for input of different ideas into one source could save lives.

 Just a thought

If they could develop something that would control chronic pain, and make it for people who want to work and contribute to society, without stigmatizing people who may need it for pain, to not be addicts, that would be great too.
Or maybe an app. to show the Dr exactly how much pain you are in. I know that some times they associate pain with high blood pressure.
I am sure that by now you have to be close to see how much pain or lack thereof a person feels in their head, for example.
Or the actual synaptic dysfunction or nerve misfire in their back, you guys have to be close to that.
If you had that way to measure pain, maybe you'd want to help cure the pain instead of masking it.
Just a thought.

 Good start but go further

Have you considered incorporating some feature allowing users/harm reduction personnel to report batches laced with fentanyl/analogues? Similar to silk road user reviews just without the whole illegal aspect.

 son died after 20 years of addiction hell because of filthy weed

my son started smoking weed in Middle School-was an addict ever since. Check the research-kids exposed to marijuana can experience permanent brain damage-I thought my son had developed mental illness - on to crack, heroin-then he limited it to drinking - became an end-state alcoholic. I watched in horror as my beautiful son became a lying, manipulative nasty person, a slave to his current "drug of choice." Terrible anxiety attacks, could never enjoy life-His future and mine wasted. Please develop programs for Middle School kids showing pictures of addicts-Is their degeneration fun & wonderful? Recreational marijuana will be legalized in Michigan. Expect many more tragedies like mine. My marriage broken, my family is destroyed

 The Heroin Problem

A big flaw in the plan to tackle the opiod epidemic is a lack of first hand knowledge with heroin addiction in the medical and research community attempting to address it.

"Revolutionary drugs" like Suboxone, are sold on the street to be abused. They are not used to get high, but to stave off withdrawal. The addict can buy time to be functional, yet not experience the consequences of relapse. They allow a user to continue in their addiction with ease.

Treatment strategies are archaic, not standardized, and hard to both find useful information or access quality care. Heroin addiction is not alcohol addiction. The brain chemistry of a heroin addict is vastly different. The outcomes more grave. The consequence of a relapse are more often than not an OD or death. Why are rehab treatment programs designed to take these as one disease? You wouldn't see proctologist for a mammogram.

I think it is time the government invests more in training social workers who understand the intricacies and consequences of heroin abuse about brain function and the dopamine reward system. Standards need to be developed and transparency in care programs for addiction. Discharged from the hospital after an OD, with a piece of paper to fill a Narcan script and call a list of rehabs. After an OD, an addict clearly is in no state to make rational choices. The waiting game is life or death for a heroin addict. Unacceptable.

 Comment on Jane's post here

In response to Jane's emotional comments above, I am deeply moved. By expressing your story, I hope that some solace may be returned by knowing that others may heed your words of advice.

The abuse of recreational drugs is our unfolding American tragedy. Marijuana proliferation is NOT the solution!

All the best.