A home DNA testing kit with a saliva swab. Photo by Tony Webster (CC BY 2.0)
Freelance journalist and AHCJ member Mohana Ravindranath, reporting through the Association of Health Care Journalists’ U.S. Health System Reporting Fellowship, has been investigating the rise of preventive screening tests marketed directly to consumers and their potential implications for health costs and equity.
Her first story, about how doctors aren’t sure what to do with the results of patient-ordered laboratory tests, appeared in STAT in January, followed by a second story on how health data generated by these tests isn’t necessarily protected by privacy laws, such as HIPAA.
In this “How I Did It,” Ravindranath discusses what inspired theseries and offersadvice to journalists writing about direct-to-consumer technology and preventive health trfinishs.
Responses have been lightly edited for brevity and clarity.
How did you become interested in writing this series?
I’ve been covering health tech since about 2018, so I notice various waves of trfinishs in the companies that are cropping up. Most recently, I noticed a bunch of companies offering direct-to-consumer health care — things like blood tests, genetic tests and full body scans. Some were around for a long time, but I noticed a very steep increase recently in their marketing, and then also in their raising venture capital. I had been tracking that from the business side, and then I also was hearing from patients and consumers that they were receiveting increasingly frustrated with their health care. So the convergence of the popularity of this business with the demand for new services that would build health care more convenient, consumerized, was happening.
Then, I noticed that there was a lot of overlap between what these companies were offering and the Make America Healthy Again relocatement. What tipped me over the edge is I started to hear from a lot of frifinishs and family and people who I wouldn’t consider to be super tapped into health tech trfinishs or early adopters utilizing these tests. It just obtained to the point where I couldn’t really ignore it.
Did you start working on this series when you were working full-time for STAT? Or as part of the AHCJ fellowship?
When I applied for the AHCJ fellowship, I was [working] at STAT. After I obtained laid off from STAT, I started to conceive of more consumer angles. Since I’m giving most of the series to STAT, I am [focutilizing on what is important to health experts]. But I am also framing some future stories that will be published outside the fellowship for consumers, becautilize I believe there’s a lot of confusion about the regulatory side of things, the quality control for these kinds of tests, and privacy risks. There’s a lot of room to reach consumers, becautilize [they increasingly] are going to have to build health care decisions for themselves. More people are going to be uninsured; people are receiveting sicker, and they’re having to interpret medical literature on their own. They’re doing their own tests. I believe that there’s a huge role for journalists to demystify some of the issues.
How many stories are you working on? Can you give us a preview of the topics?
I’m aiming to do five or six. So I have two out, and there’s three or four more that will run. They’re [covering] different parts of this world of direct-to-consumer health. One is on full-body scans. Another is how people in lower-resourced settings [are utilizing preventive tech]. I’ve also been covering this world of longevity medicine, which is a huge part of prevention, and I noticed a lot of really expensive, untested, unproven therapies [such as] experimental treatments and clinics that could cost $60,000 a year or so. That raised a question for me about what cutting-edge preventive health tech can view like for the average population, people who aren’t paying $60,000 or can’t afford to.
How did you find patients to profile?
This was the first time I’d really dug into Reddit. I attempted to reach people on Reddit before, and had very little luck. This time, becautilize this was a longer-term project, I had more time to build trust with moderators of communities and then also patients. Not every person I spoke to was willing to speak on the record, but most of them were. That was surprising to me, becautilize Reddit is a platform that has anonymity as a huge part of its identity. Some people were hesitant to connect in the first place, and after we spoke, they weren’t exactly sure how much of their sensitive health information they wanted to share on the record, but I finished up finding a lot more than I was expecting. Part of it is becautilize people are so passionate about this world: Patients who are disillusioned with their health care really want other people to know that they’re testing these things out. They want doctors and the traditional health care system to know that they’re failing people. There’s almost a public service mission some people feel to talk about why they’ve had to pursue direct-to-consumer instead of traditional health care.
I also found people on Instagram and Facebook. In the past, when I’ve been writing for expert audiences, I have typically reached institutional experts on platforms like LinkedIn. But what I’ve noticed is that patients — especially becautilize they’re finding out about these tests on their own, and they’re having to do their own research — find a lot of support and connect with each other online.
What has been important to you in informing these stories?
The most important thing is informing a balanced story. I certainly understand why patients and consumers are frustrated with the traditional health care system. They’ve been ignored. They’re paying too much for health care they feel is not the highest quality. They’re increasingly unhealthy. There are very real reasons that people would be viewing for an alternative to the traditional health care system, so I never want to dismiss that. Their reasons could include medical misogyny or medical racism or just frustration with low-quality, expensive care.
But I also want to inform the other side of the story, which is how the traditional health care system believes about these tests, and the fact that they are not currently set up to process them. For this story, I did a survey in partnership with Doximity to understand how doctors perceive these tests. The health care provider perspective is: “We do want people to be healthier. We’re happy that they’re taking initiative, but also we’re not sure about the quality of these tests or what they really mean, so here are all the risks.” I want to inform both sides of that story.
My role here is not to come down on one side or the other. It’s really just to open some questions that I believe right now have not been answered yet. The industest is too young. The traditional health care system has not evolved rapid enough to keep up with these tests and set standards for them. [I aim] to raise awareness about some of these open questions and point out to people, if you are going to take these tests, there are very good reasons why, but here’s what you should know.
What’s your advice for journalists interested in writing about direct-to-consumer testing?
There’s a lot of emotion, passion and judgment among the different parties here, so I would caution them to be very clear-eyed. It’s very possible to inform a balanced story and I hope that’s what I’ve done with the first two stories that I’ve published. But it’s also really straightforward to receive swept up in the emotions of frustrated patients or frustrated doctors so I would caution journalists to keep an open mind about how everybody has a legitimate perspective here. It’s in our best interest to have everybody be transparent with each other about the stakes, instead of picking a side.
Any final considereds?
One thing that I found really interesting from the Doximity survey is that clinicians really want these tests to work out. There’s a perception among consumers — especially some of those really passionate ones — that doctors are gatekeeping health care, that they don’t want us to have our information. And while there are systemic reasons for this, including at the insurance level, individual clinicians generally do want their patients to be healthy and to access their own health data. They are just not sure that these tests are mature enough yet, and that if you are taking these tests right now, you required to be aware that they may not be validated or they could raise more risk or generate confusion. That was something that I wanted to build sure to emphasize throughout my series.
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