Making HEAL Data Speak: Finding Scientific Solutions for People and Communities

Dear HEAL Community,

HEAL research is addressing the urgent public health crisis of opioid misuse, addiction, and overdose that demands teamwork, maximum transparency, and speed. We have a responsibility to deliver as quickly as possible the results of HEAL research so people can make evidence-based decisions about treatment, and so we can continue to find more scientific solutions for people and communities in need.

HEAL has worked hard over the past 2 years to build a comprehensive data ecosystem that will help people and communities affected by the opioid crisis through maximal data sharing and re-use. Achieving this goal means making sure all HEAL data are Findable, Accessible, Interoperable, and Reusable. Everyone in the HEAL Community is part of this ecosystem (see "Be a Part of the Change" section below). It is the glue for connecting results to people and communities who need help now.

Data as a Great Equalizer

Data speak a language that goes beyond any research discipline and is independent of any one creator or user. Data are also the record of scientific progress: Every experiment that generates a result creates data. That could be a measure of blood pressure, height, or pain intensity. It could be the number of people in a community who survived an overdose. It could be a CT or MRI scan, or even a tally of people’s views about a topic such as addiction or stigma.

To make data useful, a set of standard terms or metadata are used to compare and share – ultimately enabling data to be transformed into treatments and other products for patients. An easy-to-understand example of metadata terms might be a song’s title, artist, recording year, album, and genre. The music itself represents the data, but all the other information helps us recognize it – and search for it (and songs like it) in a music library. In the context of HEAL, the term “medication for opioid use disorder” is metadata for buprenorphine or methadone. So, a searcher need not know the specific name to get useful information.

Metadata terms need to be set up ahead of time. The HEAL Data Ecosystem team has defined a set of descriptive categories, metadata, that will allow HEAL data to speak many languages. This work helps different types of people find data because it is labeled well for diverse audiences. For example, a provider looking for clinical evidence about a pain treatment. Or a state health department employee who wants to know how to implement an opioid treatment plan in jails and prisons. Or a scientist searching for how well a certain compound gets into the brain. Or a social worker who is trying to map out a care plan for an individual with chronic pain and depression.