How ProPublica is using a Facebook group for patient safety investigation

This week US investigative non-profit ProPublica announced the launch of a new investigation page on its website dedicated to the issue of patient safety.

As well as adopting the 'series' approach to presenting material linked to an investigation - which can be found for other ProPublica investigations - its patient harm page also offers some examples of audience engagement which are said to make it just a "little bit different" to previous examples, or at least offer "variations" on past methods.

Marshall Allen, who writes about healthcare for ProPublica, told Journalism.co.uk more about ProPublica's new investigation into patient safety and how it is working to ensure community engagement and involvement from the start.

The investigation page

The investigation pages on ProPublica's site offer a place for interested readers to access the collection of content related to its work in the specific area. In some cases, such as the latest patient safety page, this includes the curation of resources, both pre-dating the investigation and more recent advice for affected parties, as well as its reporting.

The page aims to be a space "where readers and providers can be part of the patient safety conversation, get regular updates and share stories or views". A one-stop shop for all matters relating to the journalistic aspect of the investigation and more general resources based on the surrounding issues.

As such, a notable element of the page is its close relationship with an already established Facebook group on patient harm - the first for ProPublica - which was originally set up in May, and has since grown to a community of almost 1,000 members.

The Facebook group

The Facebook group is a "new thing" for ProPublica, Allen says, and provides a space "to get a conversation going among the patients themselves or among their family members or other doctors or nurses who care about this issue".

The open group describes itself as "an experiment in using social media to bring together those who have been harmed and others concerned about the problem".

We wanted to do was use social media to help quantify the issue somehowMarshall Allen

The group offers a collection of "files" such as resources on what to do if you feel you have been harmed as a patient. Now this community has been established the resources have been cross-posted on ProPublica's investigation page to "link that to the broader audience that ProPublica has online".

But Allen stressed that despite the size of the community on Facebook, sourcing stories from them is not the primary purpose of the group for ProPublica.

"I've talked to hundreds of patients who've been harmed while undergoing medical care and I'm just one person, I can't possibly talk to all these people, or write stories about these people," Allen said.

"So the idea was if we could get them talking to each other they'd be able to give each other advice, encourage one another, comfort one another, because a lot of them have been really traumatised, and then also share resources with one another and also have a collective voice as well as an individual voice.

"I think one reason this problem persists is that it's easier to dismiss one person who's complaining, but when you have a collective group of hundreds of people then it carries a little more weight. So that was another thing we wanted to do was use social media to help quantify the issue somehow."

ProPublica has since launched another Facebook group for a different investigation, this time centred on the issue of student debt.

The questionnaires

Another example of community engagement with the investigation is ProPublica's use of questionnaires for both patients and providers.

"The problem of the harm to patients is a big problem in healthcare and so we wanted to find patients who have been harmed and suffered," Allen said.

"There are a lot of injustices around this issue and this questionnaire is a way to gather this information from a lot of patients and then some of these stories we might use ourselves, other ones we might share with other journalists because we're very collaborative.

"We can gather these stories ourselves and then share them with others."

And the provider questionnaire is "a way to identify other sources", Allen said, who could be "doctors or nurses or hospital officials or administrators or insurance executives or anybody who's within the industry who would be willing to be a source of ours".

"We want all these stories we do to be very fair and very accurate and thorough in terms of the reporting we do and so this is a way to gather a large audience of sources."

So overall the approach to the patient safety reporting is centred on the value of having community engagement and involvement at the starting line of the investigation.

"We're making some of what we're doing very public and asking people to engage with us kind of as we go along the process, and not just keeping it all secret until stories are published."

But while community involvement is so important, with ProPublica encouraging those affected on either side to help it in its mission, editorial judgement will remain key.

"It's always an editorial decision because ultimately we're going to be the ones to determine what the most important thing is for us to focus on and obviously our resources are very limited," Allen said.

"You can't do everything that everyone else wants you to do, but we are taking all this feedback, it helps guide what we do and how we do it and some of the various aspects of what we do, so it's kind of both but ultimately it definitely comes down to our editorial judgement in terms of determining what's important.

"But that's why the editorial judgement is shaped by our sources, it's what the patients are telling us, it's what the providers tell us, it's what the research that's been done already ... it's a combination of everything but we're filtering all this input and then making decisions about what we're going to focus on."

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