It's ironic that at the same time I published this article, the Association of Health Care Journalists was publishing, "How and why to write personal essays and first-person reported features." https://healthjournalism.org/blog/2024/12/how-and-why-to-write-personal-essays-and-first-person-reported-features/. A completely different world view, with excerpts such as: "There are reasons (beyond potentially attracting more readers) to consider branching out into first-person territory....You don’t have to wait for something to happen to you, either; you can create a story by inserting yourself into a controversial trend or visiting a buzzy spot, for example...Including your voice in a story pitch can help set your ideas apart in a competitive freelance market, too." It's a good thing that I'm retired.
I see your point in "Journalists: please don't make yourself part of a health news" in the story about a healthy young reporter wearing and covering a blood-sugar monitor. It seems wrong in so many ways. (https://garyschwitzer.substack.com/p/journalists-please-dont-make-yourself) I suspect you'd feel the same if the reporter had diabetes?
Like you, I came up in the news business in the 1970s. It would never have occurred to me to report on a personal health problem. We were trained to keep ourselves out of the story.
But nearly 20 years ago, I had a "widow-maker" (STEMMI) heart attack. My interventional cardiologist asked: "Sir, have you done something good with your life?" I shrugged. He added: "Maybe it's time that you do." (BTW, that doctor died from an MI. Did he do something good?)
So I wrote a first-person account of my heart attack. I was in peak condition. My diet was perfect. I was skinny, I exercised regularly.
Then, I had some unusual symptoms for a MI in a male. I had a radiating pain in the wrong place. I learned the hard way how difficult it can be to diagnose a heart attack. I survived a widowmaker that should have killed me.
I decided to write a first person about me and my MI--with the blessing of my editors at the Chicago Sun-Times, where I was health reporter/editor for almost 30 years.
I started to hear from a few patients who remembered the article and got a loved one to the hospital, where their lives were saved.
Gary, would you put this sort of story in the same category of a patient getting involved in a story?
Then, things changed. I took a buyout from the Sun-Times and started teaching health writing at Medill's journalism school. (Thanks for speaking to my class.)
In 2010, while I was a lecturer at Medill, I was diagnosed with low-risk prostate cancer. Some doctors though this cancer didn't need to be treated, just observed with a protocol known as Active SUrveillance, developed in the late 1990s.
In 2010, I had a urologist who wanted ro rush me into his OR and do a prostatectomy, exposing me to risk of incontinence and impotence and even death. He wasn't alone in this aggressive approach.
Back then, 94% of men like me opted for surgery or radiation.
The remaining 6% opted for Active Surveillance (AS), close monitoring to avoid risks from aggressive treatment.
I launched a mini-blog in Facebook about my experiences on AS. I started to hear from FB friends who wanted to know about AS to help husbands, fathers, brothers, sons, cousins and friends.
This led in 2017 to editor of MedPageToday asking me to do a blog, "A Patient's Journey," in which I wrote first-person or third-person about prostate cancer. I always disclose I am a patient.
Gary, what are your thoughts about patient-journalists writing about personal experience? Who has a better understanding than those of us journalists who have first-hand experiences we can share? Is it wrong ethically when patients like to be "part of the story"? I pondered this when I was offered the gig and decided to give it a try.
I have a role model in this: the late Rose Kushner, a Washington Post war correspondent (she covered the Yom Kippur War in 1973) who became a reporter-activist and advocate for other patients with breast cancer. She wrote the 1975 book "Why Me? What Every Woman Should Know About Breast Cancer to Save Her Life."
As Kushner recovered from breast surgery, she began writing about her experiences with breast cancer for the Post. She was outspoken in her criticism of Betty Ford's September 1974 treatment for breast cancer, using personal connections in Washington, DC, to try to persuade the First Lady not to undergo a one-step biopsy and radical mastectomy, per Wikipedia.
(In my case, I criticized former NIH Director Francis Collins and U.S. Defense Secretary Lloyd J. Austin III for the poor job they did in informing the public about their cancers. Collins scared the bejesus out of men on AS in the way he described his experience. Austin tried to hide his cancer from President Biden let alone the public, perpetuating stigma about prostate cancer.)
After being told that "the President has made his decision" (regarding his wife's medical treatment) Kushner railed against the "male-chauvinist-piggery."
Gary, do you think Rose's campaigning on a personal health issue, is in bounds?
I have taken on campaigns to change how prostate biopsies are done, like Rose did in another part of the body. I have campaigned to improve treatment of PCa in Black men and Latinos? I have a whole list of things I campaign for. Should reporters campaign?
These days, I mainly campaign in my Substack newsletter,TheActiveSurveillor.com. Are bloggers different from editorial writers or journalists?
Are journalist-patients "people," too? We have insights from having been patients on the frontline and have a different view than an "objective" reporter. Can we share our own stories like other people despite being patients?
Howard, Thanks for your very thoughtful comment. As you know, I'm well aware of your work and think you've done a terrific job.
You point to many grey areas which could lead to long discussions. I'm in a time crunch right now but I wanted to respond at least with some brief thoughts for now.
There are some key differences between what I've seen you write and the instances I cited in my piece, above.
Most of what I've seen you write in recent years has not been for a mainstream news organization. A newspaper or TV station or radio station or online news organization is telling followers, "Here is the news." Much of your work, as you say, has been as a journalist-advocate, which you readily admit. So you are telling people, "This is who I am, what I'm doing and why I'm doing it and don't be surprised at what you're going to get." It's somewhat akin to the old days of TV when the network and local newscasts would have a news block, but then a separately-labeled editorial. (John Chancellor, David Brinkley or Chet Huntley on NBC, for example.)
You have been a blogger, a Facebook poster, a lecturer and now an advocate. For some time in our 16 years of HealthNewsReview work I heard from mainstream news organization journalists who believed that it was unfair to expect the same standard of journalism from a blog post as one might expect from a news story. That was their argument from within the mainstream news industry.
Your other roles - as social media poster, lecturer and advocate - are even more in the grey zone.
But your work, as I recall, was predominantly evidence-based work. And you would quote multiple sources, including independent sources, and sources who didn't always agree with one another. (I think you quoted me in the middle of one of those at least once!)
These are things I almost never see when mainstream news media journalists tell their own health care story. They tell their personal story and perhaps some quotes from the physician or health care professional they are seeing. That is different from what I've seen you do.
You also have told stories - especially about prostate cancer - that are vastly under-covered. And that sets you apart from many mainstream news media journalists who have not given that kind of attention to those issues.
I'll stop there for now or I'll be late for an appointment (no, not a medical appointment). Please pardon any typos or if I didn't address your questions adequately. But you know I'd be happy to continue this discussion with you online or on the phone.
You - and your work - are not the kinds of examples I have criticized. And it's for some of the reasons I have just hurriedly jotted down. Keep it up.
Thank you thank you thank you Gary. As ever, you are spot on.
It's ironic that at the same time I published this article, the Association of Health Care Journalists was publishing, "How and why to write personal essays and first-person reported features." https://healthjournalism.org/blog/2024/12/how-and-why-to-write-personal-essays-and-first-person-reported-features/. A completely different world view, with excerpts such as: "There are reasons (beyond potentially attracting more readers) to consider branching out into first-person territory....You don’t have to wait for something to happen to you, either; you can create a story by inserting yourself into a controversial trend or visiting a buzzy spot, for example...Including your voice in a story pitch can help set your ideas apart in a competitive freelance market, too." It's a good thing that I'm retired.
Gary,
I see your point in "Journalists: please don't make yourself part of a health news" in the story about a healthy young reporter wearing and covering a blood-sugar monitor. It seems wrong in so many ways. (https://garyschwitzer.substack.com/p/journalists-please-dont-make-yourself) I suspect you'd feel the same if the reporter had diabetes?
Like you, I came up in the news business in the 1970s. It would never have occurred to me to report on a personal health problem. We were trained to keep ourselves out of the story.
But nearly 20 years ago, I had a "widow-maker" (STEMMI) heart attack. My interventional cardiologist asked: "Sir, have you done something good with your life?" I shrugged. He added: "Maybe it's time that you do." (BTW, that doctor died from an MI. Did he do something good?)
So I wrote a first-person account of my heart attack. I was in peak condition. My diet was perfect. I was skinny, I exercised regularly.
Then, I had some unusual symptoms for a MI in a male. I had a radiating pain in the wrong place. I learned the hard way how difficult it can be to diagnose a heart attack. I survived a widowmaker that should have killed me.
I decided to write a first person about me and my MI--with the blessing of my editors at the Chicago Sun-Times, where I was health reporter/editor for almost 30 years.
I started to hear from a few patients who remembered the article and got a loved one to the hospital, where their lives were saved.
Gary, would you put this sort of story in the same category of a patient getting involved in a story?
Then, things changed. I took a buyout from the Sun-Times and started teaching health writing at Medill's journalism school. (Thanks for speaking to my class.)
In 2010, while I was a lecturer at Medill, I was diagnosed with low-risk prostate cancer. Some doctors though this cancer didn't need to be treated, just observed with a protocol known as Active SUrveillance, developed in the late 1990s.
In 2010, I had a urologist who wanted ro rush me into his OR and do a prostatectomy, exposing me to risk of incontinence and impotence and even death. He wasn't alone in this aggressive approach.
Back then, 94% of men like me opted for surgery or radiation.
The remaining 6% opted for Active Surveillance (AS), close monitoring to avoid risks from aggressive treatment.
I launched a mini-blog in Facebook about my experiences on AS. I started to hear from FB friends who wanted to know about AS to help husbands, fathers, brothers, sons, cousins and friends.
This led in 2017 to editor of MedPageToday asking me to do a blog, "A Patient's Journey," in which I wrote first-person or third-person about prostate cancer. I always disclose I am a patient.
I slowly was transforming into a journalist-activist advocating for men with low-risk prostate cancer. I wrote op-eds like this for STAT https://www.statnews.com/2022/01/11/active-surveillance-for-prostate-cancer-the-gift-that-keeps-on-giving/ and was interviewed by Jane Brody: https://www.nytimes.com/2020/03/02/well/live/before-prostate-surgery-consider-active-surveillance.html
Was I still a journalist? What was I?
Gary, what are your thoughts about patient-journalists writing about personal experience? Who has a better understanding than those of us journalists who have first-hand experiences we can share? Is it wrong ethically when patients like to be "part of the story"? I pondered this when I was offered the gig and decided to give it a try.
I have a role model in this: the late Rose Kushner, a Washington Post war correspondent (she covered the Yom Kippur War in 1973) who became a reporter-activist and advocate for other patients with breast cancer. She wrote the 1975 book "Why Me? What Every Woman Should Know About Breast Cancer to Save Her Life."
As Kushner recovered from breast surgery, she began writing about her experiences with breast cancer for the Post. She was outspoken in her criticism of Betty Ford's September 1974 treatment for breast cancer, using personal connections in Washington, DC, to try to persuade the First Lady not to undergo a one-step biopsy and radical mastectomy, per Wikipedia.
(In my case, I criticized former NIH Director Francis Collins and U.S. Defense Secretary Lloyd J. Austin III for the poor job they did in informing the public about their cancers. Collins scared the bejesus out of men on AS in the way he described his experience. Austin tried to hide his cancer from President Biden let alone the public, perpetuating stigma about prostate cancer.)
After being told that "the President has made his decision" (regarding his wife's medical treatment) Kushner railed against the "male-chauvinist-piggery."
Gary, do you think Rose's campaigning on a personal health issue, is in bounds?
I have taken on campaigns to change how prostate biopsies are done, like Rose did in another part of the body. I have campaigned to improve treatment of PCa in Black men and Latinos? I have a whole list of things I campaign for. Should reporters campaign?
These days, I mainly campaign in my Substack newsletter,TheActiveSurveillor.com. Are bloggers different from editorial writers or journalists?
Are journalist-patients "people," too? We have insights from having been patients on the frontline and have a different view than an "objective" reporter. Can we share our own stories like other people despite being patients?
I vote yes. What do you and tour readers say?
Howard Wolinsky
Howard, Thanks for your very thoughtful comment. As you know, I'm well aware of your work and think you've done a terrific job.
You point to many grey areas which could lead to long discussions. I'm in a time crunch right now but I wanted to respond at least with some brief thoughts for now.
There are some key differences between what I've seen you write and the instances I cited in my piece, above.
Most of what I've seen you write in recent years has not been for a mainstream news organization. A newspaper or TV station or radio station or online news organization is telling followers, "Here is the news." Much of your work, as you say, has been as a journalist-advocate, which you readily admit. So you are telling people, "This is who I am, what I'm doing and why I'm doing it and don't be surprised at what you're going to get." It's somewhat akin to the old days of TV when the network and local newscasts would have a news block, but then a separately-labeled editorial. (John Chancellor, David Brinkley or Chet Huntley on NBC, for example.)
You have been a blogger, a Facebook poster, a lecturer and now an advocate. For some time in our 16 years of HealthNewsReview work I heard from mainstream news organization journalists who believed that it was unfair to expect the same standard of journalism from a blog post as one might expect from a news story. That was their argument from within the mainstream news industry.
Your other roles - as social media poster, lecturer and advocate - are even more in the grey zone.
But your work, as I recall, was predominantly evidence-based work. And you would quote multiple sources, including independent sources, and sources who didn't always agree with one another. (I think you quoted me in the middle of one of those at least once!)
These are things I almost never see when mainstream news media journalists tell their own health care story. They tell their personal story and perhaps some quotes from the physician or health care professional they are seeing. That is different from what I've seen you do.
You also have told stories - especially about prostate cancer - that are vastly under-covered. And that sets you apart from many mainstream news media journalists who have not given that kind of attention to those issues.
I'll stop there for now or I'll be late for an appointment (no, not a medical appointment). Please pardon any typos or if I didn't address your questions adequately. But you know I'd be happy to continue this discussion with you online or on the phone.
You - and your work - are not the kinds of examples I have criticized. And it's for some of the reasons I have just hurriedly jotted down. Keep it up.
Regards,
GS
Thanks, Gary.
I am in a grey zone. I appreciate your analysis.
I am glad to see you back in the game. We need you.
Hope you find time for pickleball and photography.
Howard