In late 2004, I was engaged by Dr. Paul Brooks and Art Maher to lead the technology efforts of a much publicized court settlement and resulting health study, the C8 Health Project. In 2005 a landmark settlement was approved by the Wood County, West Virginia Circuit Court, in the case of Leach v. E.I. du Pont de Nemours & Co. The case alleged that DuPont contaminated six water systems along the Ohio River, which separates West Virginia and Ohio. C8 is most commonly known as a controversial chemical found in Teflon and other commercial products. The intent of the C8 Health Project was to collect a large amount of survey data as well as blood samples from the estimated nearly 80,000 people who lived, worked and went to school in the region.
The C8 Health Project was tasked with what had never been done anywhere in the world. For the C8 Health Project, I led the technical design, workflow, security models and procedures and every other aspect of technology related efforts. I led my technical team to collect, store and manage the survey data, blood test results from three labs, and scanned documentation from more than 69,000 participants during a testing period that lasted only a little over 11 months. At its peak, the C8 Health Project successfully and accurately processed more than 400 participants each day. The breadth of the data collected during the project is widely viewed as the largest study ever conducted in a water contamination case. Because of the project, my innovative workflow, security procedures and system of checks and balances removed elements of human error and ensured the project was a success.
The obstacles the C8 Health Project team were faced with were wide and varied. Including but not limited to:
- Collect survey data on up to 80,000 potential participants accurately and securely and receive that completed survey data electronically to initiate the participant ID and basic records.
- Schedule participants for an appointment at one of four testing service centers.
- Check the participant in at the facility, take their picture and validate eligibility based on paperwork that was provided by the participant such as utility bills, school records, or other verifiable documentation and assign the participant with a bar-coded name tag.
- Provide a software mechanism to allow a Registered Nurse to review the survey data with the participants to ensure accuracy of the information and make any necessary edits or corrections.
- Provide a software mechanism for the lab technician to scan the bar-coded name tag and retrieve the correct participant record for collection of blood and also initiate a system of checks and balances to insert trackable but random QA samples and initiate an electronically controlled chain of custody (CoC) form.
- Check the participant out of the facility and issue a secure check for payment for taking part in the C8 Health Project. The participant received $150 for the survey data and an additional $250 if they provided a blood sample. The issue of checks was secure and tightly controlled to ensure participants could only be paid the correct amount. Implemented PositivePay in conjunction with United Bank to ensure forged checks could not be cashed.
- Daily transmit CoC data to the chemical testing labs for sample tracking.
- Accept lab results electronically from LabCorp and the chemical labs and accurately attach those records to the correct participant records.
- Mail the completed results to the participant.
- Provided a myriad of management reports to Brookmar to track various processes and procedures and ensure protocols were being followed.
- Provided regular downloads via a secure method to the West Virginia University School of Medicine as well as the C8 Science Panel for statistical studies.
- Brookmar personnel even validated thousands of medical records with physicians to ensure the accuracy of the data regarding medical conditions provided by the participants.
- As an unexpected result, several people’s lives were saved because their results from LabCorp triggered serious conditions they were unaware of that required immediate care.
The data collected during the project was used by a panel of epidemiologists (www.c8sciencepanel.com) to determine if the chemical C8 can be linked to human health risks. You can read more about the project at www.c8healthproject.com.
Although the accomplishments of the project were tremendous and experts working in the field have stated they felt that no one in our lifetime would ever accomplish what we did with the size of the study and the tight management of data, we feel the real value was in doing something no one had ever done in the past. We used a commercial Electronic Health Records (EHR) solution along with a commercial mid-range accounting solution and developed middle-ware and several add-ons along with custom reporting to provide a secure and accurate dataset to scientists and researchers on a large scale.
The following is an excerpt from the C8 Health Project Chronicle written by West Virginia University regarding my role in the project. This information was provided by my client, Brookmar:
The Role of Information Technology Systems and the Legal Team
“…a rock solid information technology support group was an important component for the success of the Health Project. Mr. Troy Young proved to be invaluable. He and his companies were able to design and manage all types of computer based support. Chief among these were the on-line survey, and the storage of all data associated with the survey, consent forms, data on the results of the blood tests, medical records data, and mailings, just to name the most obvious. As evidenced by printed e-mails of all Brookmar communications, Mr. Young was constantly on-call and capable of fixing problems as they arose. In retrospect, an information technology consultant/manager less available and less capable than Troy Young could have proven a significant, costly hurdle for the Health Project, and delayed the project significantly.
- Downloadable Information and CV for Troy Young (more detailed than above information)
- Press – State Journal Article (2006)
- The C8 Health Project: Design, Methods, and Participants (NIH.GOV) (see footnotes for reference to my involvement)
- C8 Science Panel