What we learned from letting a mother and her son tell their own story
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What we learned from letting a mother and her son tell their own story
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What we learned from letting a mother and her son tell their own story
This week, we publish a story We write less than half of. Most of it was written eight years ago by a mother whose 10-year-old son was going through a clinical trial of drugs at the University of Illinois at Chicago that tested lithium in children with bipolar disorder.
After we reported in April that Dr. Mani Pavuluri, a former UIC psychiatrist who oversaw several federally funded studies, violated research rules, did not alert parents to the risks and falsified the data to cover up the misconduct, we realized that There was still a significant part of the story missing: the children who had participated in Pavuluri's studies? Pavuluri has said he treated each of his patients and research subjects with care, while UIC said he applies the highest standards of integrity in his research studies.
We made a call for people to tell us what they know. We hear from at least a dozen families. One of the parents who approached was Aline, who told us that a study had devastating effects on his son Wilson and his family. In addition, he said he had kept an online diary throughout the family experience.
We, as reporters, decided above all to get out of the way and publish Aline's diary with your permission. Of course, we still did all the reports we would expect: getting documents, asking the right questions, confirming facts, building trust with the sources, but we wanted her to tell her own story. We also ask her and her son, now 18, to write down the text with her reflections today.
Here is a sample:
Design and production of stories by Rob Weychert / ProPublica
The format is unusual, and for this newsletter, we took the opportunity to ask each of us about how we came to the story and how we worked together.
Logan: Jodi, you come with a "traditional" journalistic background. How is this story different from other stories you've worked on? What limits pushed you as a journalist?
Jodi: I wanted the readers to have the same experience I had when I read the mother's diary for the first time, so our goal was to keep it as long as possible. We had to write some material to provide context to the readers, but it was a challenge to retain writing to emphasize the voice of the family. The presentation is unique, with family photos, video and audio, like a scrapbook. Instead of traditional quotes, your comments are directly related to the journal as annotations. I had to think more visually, more conversationally.
The family was a very important part of the process, so it was more collaborative than a typical story. I went to his house maybe six times. The story was built around the mother's photos and writings, so we decided it was important for her to see how we presented them. That is atypical.
While the story still depended on fundamental techniques of journalism, it also depended on the courage and willingness of the family to open their lives. In addition to asking us to protect your privacy by using your middle name, you did not request that you exclude or change anything else.
We spent days in a conference room doing what looked like an art project. We had transcripts of our interviews, scissors, sticky notes, tape and large sheets of paper. We publish the sheets of paper throughout the room, cut and paste journal entries and place the annotations next to them. "We write" a large part of the story in that way.
Jodi: Logan, as a reporter who specializes in commitment, had the idea of asking readers of our first story to contact us if they or their relatives have been patients of the main psychiatrist, Pavuluri, or their research subjects. Why did you think it was important to hear from them? Was the result what you expected?
Engagement journalist Logan Jaffe (pictured) and journalist Jodi S. Cohen spent many days in a conference room prototyping the format of the story before it became a digital presentation. (Jodi S. Cohen / ProPublica Illinois)
Logan: the intention was to listen to the people most affected by the UIC's investigation. Due to the privacy rules, there was no way for the university to give us information or records that show how the participants were affected. And even if it did, the records often only provide a glimpse of what a person's life experience was like. In his previous report, he was able to show the bad behavior and bad behavior of both Pavuluri and the university, but the question remained as to how the essays impacted and harmed the participants.
Since there was a relatively small number of participants and family members who could respond, I hoped that history would find these people difficult, and much more to get them to actually communicate with us. Then, when we received the email from the mother who told us that her son participated in the tests. Y that she kept a diary during all that, which was really a gold mine, and unexpected.
It is possible that the university did not provide us with documents about the participants, but we ended up with a different type of document: a magazine. What the family wrote about itself is more true to their experience than anything else we can write, and more than any record would tell us.
Logan: What did you learn by approaching a story in this way, through a deep collaboration with a source that connected with us, in part, because of our call?
Jodi: I learned the value of asking readers to participate in the reports. We could have expected families to contact us after we published our initial investigation. Instead, we specifically ask that you contact us, in part through sharing this graphic:
It felt like a long shot. But we heard from a dozen parents whose children had been patients and research subjects. While this story is about only one of them, all of their stories helped to set the direction of our reports. Would they have arrived if we had not included the call? Perhaps. But I think the specific question made the difference.
Jodi: You talk a lot about the importance of building a community and informing the communities. What have you learned from this experience?
Logan: I think, for this story, we do not necessarily build or inform with a community, but with an individual who has been looking for a community of their own.
In her diary, the mother writes that she feels alone, that she does not have a community: "I know there are other families that deal with the same things but I do not know how to find them. I feel so alone in this. There is no one to turn to and ask what we are doing now. ... "
Remembering that feeling of loneliness is partly what motivated her to share her diary with us. When we asked the mother to write a last journal entry, she offers herself not only as a resource, but also as a test for others that they are not alone in similar struggles: "It would be a blessing for me to help other people who They face similar difficulties. " circumstances. I hope my story provides some hope that you too will overcome the challenges. I want this to be the story for other families I was looking for 8 years ago. "
By listening and working so closely with a single person, and by allowing her and her family to speak for themselves through our platform, we can help communities to find each other.
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