- http://www.freep.com/article/20120805/NEWS06/308050233
- http://www.freep.com/article/20120805/NEWS06/120804036
- http://www.freep.com/article/20120806/NEWS01/308060069
- http://www.freep.com/VideoNetwork/1770833471001/ALS-Living-with-Mortality
Provide names of other journalists involved.
Kimberly P. Mitchell, Detroit Free Press Photographer/Videographer David Pierce, Detroit Free Press Graphic Artist
List date(s) this work was published or aired.
Aug. 5 and 6, 2012
Provide a brief synopsis of the story or stories, including any significant findings.
It’s one of the deadliest diseases known to man — it ravages the body, withers the limbs and in its final stages, it chokes its victims to death by shutting down their ability to breathe. It’s Lou Gehrig’s disease, amyotrophic lateral sclerosis, or ALS. It killed baseball great Gehrig — as it kills almost all its victims within 3-5 years of diagnosis. There is no cure. A clinical trial underway at Atlanta’s Emory University Hospital is led by University of Michigan researchers who are hoping to move the clinical trial to Michigan. Medical Writer Robin Erb and videographer Kim Mitchell traveled to Atlanta to talk with patients who were in the trial — patients who knew that the effort, because of its early stage, most likely would never benefit them, but they hoped that by being guinea pigs, they could spare future generations the horror of this disease. The package captured the heartbreak of the disease, the promise held by trials such as this one, and the stoicism with which researchers sometimes spend decades chasing the holy grail of a cure. Mitchell stitched together funny, tense and emotional moments from patients and family members with footage from a surgery where 100,000 stem cells were injected into a patient in the most recent surgery in the trial.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Clinical trial investigators were initially skeptical of the story the Free Press proposed, and the story could have ended before the first on-the-record interview. But by studying their research papers (some of which were requested from peer-reviewed journals) as well as a number of reports from easily-accessed government sites (e.g. www.clinicaltrials.gov), the reporter not only found context for the package but also — more importantly from the outset — convinced reluctant investigators of her ability to relay a complex medical story to the everyday reader.
Explain types of human sources used.
Clinical trial investigators in Atlanta were originally hesitant to allow the reporting team from Detroit in their operating room, so the reporter turned to patients, staff at two university hospitals and scientists elsewhere for a better understanding of the disease, the clinical trial and medical research in general. When investigators ultimately were convinced of the paper’s commitment to the story and a surgery scheduled just days away, the reporting team (the reporter and a videographer) walked into the operating room with an understanding not only of the disease progression and the intricacies of the surgery, but also the willingness of patients to be human guinea pigs, the cautious steps of a clinical trial and a better understanding of the passion — as well as the lack of guarantees — in medical research. It was an experience and understanding crucial to placing the reader in the middle of this audacious research.
Results:
The University of Michigan emailed the series to subscribers, tweeted the stories, and requested dozens of hard copies of the series for its governing council, leadership advisory boards and others. ALS of Michigan reported that calls and emails spiked after the stories Though there is no way to measure these results, the Free Press also published a series of phone numbers and websites for those interested in finding out more about ALS or about signing up for clinical trials.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No corrections or clarifications.
Advice to other journalists planning a similar story or project.
While background understanding is important in any story, it’s absolutely essential when it comes to understanding complicated science, convincing researchers that you can do the job, asking the right questions, and getting it right for readers. Those preliminary interviews in this case meant the reporting team — even in the heart-pounding tension of an operating room in which a man’s cervical spinal cord lay bare — knew exactly what they were recording, could distill from the scene its most poignant pieces for the reader and viewer, and place the entire experience in spot-on accurate context — all toward offering readers a better understanding of the work behind any medical breakthrough.