Sometimes all we need is a quick suggestion from our peers to zero in on a good story. Here we turn to front-line journalists for advice and some simple insight to add to our repository of "shared wisdom."
What suggestions do you have for journalists reporting on COVID-19 vaccinations disparities among specific populations? Data from various sources may not always agree.
It’s important to define your data at the outset and make sure everyone on your team agrees on the criteria. Multiple variables can change the data and outcomes. Don't be afraid to go back to health officials and ask the same question again. And again. How health officials design, plan and execute the vaccine rollout is complicated. We need to understand their reasoning and whether their decisions are based on scientific evidence.
April Simpson is a senior reporter covering racial equity at the Center for Public Integrity. She jointed the organization in October 2020. Susan Ferriss, a prize-winning former foreign correspondent, joined the Center in 2011, where she has covered immigration, criminal justice and education. Mc Nelly Torres, an award-winning investigative journalist with more than two decades of experience, joined the Center as an editor in January 2021.
In your recent story on rapid antigen testing in nursing homes, you had to sort through many layers of rules and regulations for testing of residents and staff. How did you keep it all straight?
For reporters, one of the difficulties in covering this pandemic is constantly shifting guidance from both federal and state officials on COVID-19 testing and who should get tested. Nursing homes are subject to their own regulations from state health departments and the U.S. Centers for Medicare and Medicaid Services.
As a result, for this story, that meant checking all of the following sources:
State public health department guidance on testing within nursing homes. Many states in recent weeks have moved to mandate testing for nursing home staff and/or residents, and they generally say what kinds of tests should or must be used to meet those requirements.
Nursing home testing recommendations and requirements issued by CMS. The federal health agency has slowly moved from recommending COVID-19 testing in nursing homes to mandating it in certain scenarios.
Guidance from FDA on the general use of antigen tests, because that agency granted the emergency use authorizations that allow them to be used during the pandemic.
One of the problems that I discovered along the way is each one of the federal agencies said something slightly different about how the antigen tests should be used. And then, adding to the problem, the misaligned federal guidance sometimes would conflict with what state health departments were saying. That became a significant part of the story but it isn’t unique to nursing homes – this issue could manifest for other COVID-19 testing stories, too.
Rachana Pradhan, a Kaiser Health News correspondent, reports on national health policy decisions and their effect on everyday Americans. A recent recent story was about rapid antigen testing in nursing homes. Pradhan came to KHN from Politico, where she covered health care policy and politics on national and state levels.
What suggestions do you have for reporters who want to cover the issue of aging physicians in their communities?
This is not an easy story to tackle. However, It certainly hit a raw nerve with MedPage Today readers because the first of three stories wrote in March in a series on the topic has generated the 10th largest number of page views for the entire site since Jan. 1, 2017, and garnered one of the highest numbers of comments, as of May 17.
First, see how many older doctors are still practicing in your city, county or state. Call up a few senior physicians that you know in your community and ask them about this trend, Undoubtedly, they’ve heard about this issue and may know of some local health systems or medical groups that have started talking about the idea of launching some sort of screening program if they aren’t already doing so.
Ask your hospitals’ medical executive committees and larger medical groups what their policies are regarding recredentialing their clinicians, and whether they have separate policies for testing senior clinicians at a certain age. Ask state licensing agency officials, who might have opinions on whether late-career physicians are more or less likely to be the subject of a disciplinary action than younger cohorts. ask egional carriers if late-career physicians had higher rates of claims, either in volume of claims or dollars paid,
Record — with consent — all of your conversations with these doctors. Trust me on this. If your sources object, don’t do the interview. You want to be able to use what you hear, and you don’t want any confusion about what is agreed to be off the record or on background.
This tip sheet by Clark offers additional reporting ideas and background information on this increasingly prevalent issue. Clark is a senior investigations reporter for MedPage Today, in New York, and for inewsource/KPBS in San Diego. She lives in San Diego. The Hustling Hope series has won several awards, including first place in the small market investigative category in AHCJ's 2018 Awards for Excellence in Health Care Journalism.
Your story about treating Alzheimer’s disease uncovered evidence that lifestyle changes could slow its progression. What advice do you have for covering topics that challenge conventional thinking?
Do your homework. When you're writing a story that challenges current paradigms, make sure that you have rigorous research from legitimate academic institutions to back it up. Be open minded but do the work. I interviewed eight of Bredesen's patients, read their medical records, and even interviewed one of the neuropsychologists who had performed some of these tests. He told me that in thirty years of doing this, he had never seen this kind of improvement. But again, do your homework and make sure you're on the right track.
Linda Marsa is a contributing editor at Discover and a former Los Angeles Times health reporter. Her work has been anthologized in Best American Science Writing and she has authored two books, most recently: Fevered: Why a Hotter Planet Will Harm Our Health and How We Can Save Ourselves. Her story, “Alzheimer’s under attack,” won an Award for Excellence in Health Care Journalism.
How do you deal with guilt and the temptation to personally intervene when the subject of your piece is in a tough situation — such as in your story, when a person asked you for food?
Not crossing an ethical line when reporting on those who need help is challenging. Journalism can change things, but those changes are often not in the ways of laws or government investigations.
Lisa Gillespie is the health and innovation reporter at WFPL-Louisville, Ky. She recently reported a story about seniors who struggle to get nutritous food. Most recently, Gillespie was a reporter for Kaiser Health News. She has covered all things health — from Medicaid and Medicare payment policy and rural hospital closures to science funding and the dietary supplement market.
How did you learn about this Death Certificate Project if professional organizations hadn’t widely publicized it and media hadn’t covered it?
Talk to your neighbors. You never know when their experiences will turn into important story ideas.
Cheryl Clark is a senior health care reporter for MedPage Today. She recently wrote about a California effort to identify excessive opioid prescribers by evaluating death certificates and contacting patients and doctors to ask about treatments.
How did you direct the students’ reporting so that public officials they later interviewed would take their questions seriously?
We spent months looking through state records before we ever did any writing. We combed through files in the courthouse to look at the scope of elder abuse in the state, and those cases, and looked for patterns. It was old fashioned journalism - we looked through hundreds of court records and then brought in some outside help to crunch data. That’s the way I teach them. They have to do it right, dig, deep, and produce something no one can poke holes in, and write it well.
I told them they were real reporters and should demand and push for information they were entitled to. Spending all that time with the court records gave them the data to sit there and ask why things happened the way they did. It was a good lesson in using court files and also how to turn that information into real stories.
Tracy Breton, a Pulitzer prize-winning investigative and legal affairs reporter at the Providence Journal for 40 years, and now professor of English and non-fiction writing at Brown University, supervised a student-produced, multipart series on elder abuse for the Providence Journal and a new community journalism venture, Community Tribune.
How did you determine which data sets to use and how to best analyze this huge dump of newly-released Payroll-Based Journal nursing home staffing files?
I guided myself with two intersecting principles: to reflect residents’ lived experience as accurately as possible, and to be fair to the facilities.
When in doubt, I erred on the side of caution.
Jordan Rau of Kaiser Health News used the new data to focus on the wide fluctuations in nursing home staffing from day to day, with staffing consistently plummeting on weekends. The analysis resulted in this front page story in The New York Times. He discusses his methodology further in this AHCJ How I Did It piece.
What’s your secret to gaining thousands of followers on Twitter?
Be deliberative when using social media. Determine which platform you’re best at and find your comfort zone. I use Twitter akin to a newswire and share health news in a predictable manner. I tweet at regular intervals during the day and only about a few important topics: journalism, health policy, and my passion, exercise, especially running. I try to avoid the mundane, such as what I had for breakfast. Be rational and pragmatic and make deliberate choices about staying on topic. Use common sense about who you follow – make sure they have a real name, image, and contact information to reduce the likelihood of trolling. And of course, don’t say anything you wouldn’t say to your mum.
André Picard is the health columnist at The Globe and Mail.
What key elements should journalists be aware of when reporting on medical studies which involve or may affect older adults?
Health journalists in particular have an obligation and opportunity to tease the threads of innovation, drug discovery, and regulatory environments to provide informed context and a powerful narrative when reporting on clinical literature. This is particularly critical when evaluating studies regarding older adults and other vulnerable groups. Not only do older adults have specific challenges which may affect trial outcomes such as slower drug metabolism, multiple chronic conditions, multiple medications and/or cognitive decline, but clinical trials may exclude the very population a drug was developed to help, or may not adequately represent the target demographic. Health care journalists should report from the intersection of research, clinical medicine, and “health economics and outcomes research” (HEOR). An excellent resource to help journalists make sense of study data is AHCJ Medical Studies core topic.
Bonny P. McClain is a medical writer who writes about real-world data reflecting how patients fare in the actual clinical environment.
How do you overcome roadblocks when reporting on end-of-life care, including reluctance by patients or families to discuss the issue?
Finding people and medical professionals willing to talk about the end of life is a lot easier now, compared with 20 years ago … however, there remains a general fear around confronting death in our society (such as thinking and talking about the end of life), and there is no unified consensus or plan of action for educating or encouraging the public to jumpstart these conversations.
When prominent political figures rail about "death panels" (as they did during the ACA debate in 2009), progress around public education and end-of-life care is set back.
Because of patient confidentiality rules, access to patients is not easy and takes time and patience. That being said, I did find physicians in the palliative care community who were wonderfully cooperative. They were generous with their time, and many shared their stories.
JoAnn Mar is a longtime reporter and now producer at KALW-San Francisco. She has worked as an attorney and an adjunct professor in broadcast journalism. As a 2016 AHCJ Reporting Fellow on Health Care Performance, she reported on the current state of end-of-life care for the terminally ill and whether anything had changed since a 1995 landmark study found that the majority of Americans tend to spend the end of their lives in pain and suffering.
How can reporters make the broad issue of hospice quality more relevant to their readers?
In writing about quality, it’s important to mention that the topic of measurement accuracy is controversial and hospice care is no exception.
Many hospice providers and researchers have problems with the measures currently being used. For example, pain screening and assessment measures don’t address whether pain was controlled. Same with shortness of breath — the measures don’t score whether treatment resolved the symptoms.
One way to localize your story is to ask readers who have experience with hospice for a family member what measures they would like to see added to the scorecard, or ask hospices and palliative care providers about their preferences, which may indicate unique problems in your region.
Cheryl Clark writes for inewsource, a nonprofit media organization in partnership with KPBS in San Diego, and New York-based MedPage Today, which circulates to health providers nationally.
Where should reporters look for stories about Medicaid?
When reporting on Medicaid cuts, state budgets often provide a trove of stories. Medicaid is among any state’s most expensive, and fastest growing, programs so every governor looks for ways to contain costs. Sometimes these are easy to spot. Changing eligibility requirements or cutting services are common practices, particularly when budgets are tight.
Dan Goldberg reports on city politics, focusing on hospitals and health care. He writes Politico New York Health Care, an early-morning email that informs the daily conversation in New York among health-industry insiders. Before joining Politico New York, Goldberg was the health care reporter for the New Jersey Star-Ledger.
How did you find Ted, the patient in "Prince Vinegar’s Last Stand," and convince him and his wife to allow you to become an intimate part of their lives?
I contacted a local chapter of a national group called Compassion & Choices, which has offices throughout the country, and asked to follow a terminally ill person who wanted to control his or her own death. The counselor, a physician, introduced us to Ted – and throughout our reporting she became a wonderful character and source of reason and guidance…Members of physician-aid-in-dying groups are willing to help find people with terminal illnesses who want to share their journeys. Just make sure you explain, early on, what you need, why you want to tell this story, what’s in it for the person you’re following. And prepare your editor: Sometimes stories shift, and surprise you, turning into something very different from the one you set out to tell.
Lane DeGregory is a Tampa Bay Times feature writer who prefers writing about people in the shadows. She wrote about the end of one man's life and the decisions that had to be made. Herstories have appeared in the Best Newspaper Writing editions of 2000, 2004, 2006 and 2008. She has taught journalism at the University of South Florida - St. Petersburg and at the Poynter Institute for Media Studies, been a speaker at the Nieman Narrative Conference at Harvard University and has won dozens of national awards, including the 2009 Pulitzer Prize for feature writing.
How can reporters take a step back from their assumptions when reporting on what appear to be common knowledge issues, such as falls in the elderly?
We all have unconscious (or conscious) biases that impact our research and reporting. Try to put preconceived notions, “conventional wisdom” or popular beliefs aside when digging for information — it may not prove out.
For example, when writing the recent tip sheet on fall prevention, I was surprised to learn that falls are not an expected, ordinary consequence of growing older and that they can be prevented. But until this topic became personally relevant, I didn’t pay very close attention.
Mark Taylor is an independent health care journalist based near Chicago. Taylor was legal affairs reporter for Modern Healthcare magazine and writes for newspapers, as well as Medicare NewsGroup and Hospitals & Health Networks. He is a former Kaiser Media Fellow and a founding member of AHCJ.
How did you and your colleague Elizabeth Church find on-the-record sources for your award-winning home care series when many clients were afraid to speak out for fear of retribution?
We published a few early stories on troubles with home care in Ontario (including an A1 investigation of how the provincial government's efforts to give in-home personal support workers a raise had gone awry) in which we asked readers who had encountered problems with publicly funded home care to contact us. We put our email addresses at the end of the stories.
Next, we approached a health-care advocacy organization that had conducted consultations across the province to put us in touch with clients they had heard from. Finally, we approached opposition MPPs (members of Parliament) and local councillors to see if they would pass on the names of constituents who had asked for their help dealing with the Community Care Access Centres (CCAC.) CCACs. That's how we found the Oshawa mother and son in our lede.
What are key questions that journalists should ask themselves (and their sources) when reporting on hospital scorecards?
Who is releasing the hospital ratings and why?
What data are they using and how is that data gathered?
How did the measures get combined to inform the rating?
What counts for or against the hospital?
What are the limitations of the data?
Does my story make statements that are not supported by the data?
It’s never as black and white as anyone would wish.
Marshall Allen covers patient safety for ProPublica. He is one of the creators of ProPublica’s Surgeon Scorecard, which published the complication rates for about 17,000 surgeons who perform eight common elective procedures.
How can reporters make sure that a limited look into a condition or situation is not just an outlier?
If I had been doing an article based on that one afternoon, I would not have seen the true story. It brought home the danger of relying on small observational studies to form an opinion of a therapy, treatment or concept.
I wish we all had the luxury of seeing a non-emergent situation for more than an hour or two for our daily reporting.
How can U.S. health journalists tap into the expertise of our foreign counterparts?
The next time The Commonwealth Fund publishes its international comparisons, email a panelist in England or the Netherlands and ask why it’s easier to get after-hours care in those countries than it is in the United States. That’s more interesting than simply repeating the stats in a press release.
When the next “blockbuster” statin shows up, contact NICE to learn about the UK’s treatment guidelines. When you write a piece about those sky-high deductibles and out-of-pocket maximums for Obamacare policies, find out how other countries like Portugal deal with user fees. Portugal does have a national health system with some user fees. People with low incomes don’t have to pay them, and those who do pay no more than about $54 U.S. for most services.
How did you come up with the concept for your winning idea and why are you choosing to investigate end-of-life care?
My interest in end-of-life care started with the sensational controversy surrounding assisted suicide in the mid 1990's—Derek Humphrey and the Hemlock society, Jack Kevorkian and his suicide machine were making headlines at that time. Although there was little public support for Kevorkian or Humphrey, a majority of Americans favored physician aid-in-dying. As I dug deeper into this topic, it became clear to me that driving this sentiment was the desire for a "good" death. Most Americans wanted the option of a quick end to their lives, if their final days would most likely be spent in pain and suffering.
In the course of my research in the late 90's, I found out to my surprise that most terminally ill Americans did not receive good end-of-life care. The 1995 Robert Wood Johnson SUPPORT study surveyed ten thousand patients and concluded that a majority of Americans experienced needless pain and suffering at the end of their lives. I wanted to find out why better end-of-life care was not made available to patients living in the most medically advanced country in the world. What I discovered was that pain management and palliative care were not required courses for doctors and medical students. Even today, there are not enough specialists in the field of palliative care to meet the needs of those at the end of life.
At that time, death and dying did not receive much media coverage. In 1999, I produced a three-part documentary program series for public radio on physician-assisted dying and end-of-life care. My goal was to stimulate public discussion around death and focus on care for the terminally ill.
My own mother passed away recently. Her death was quick and unexpected and fortunately, she did not endure any prolonged suffering. My father is now nearing the end of his life and these events have motivated me to revisit the topic of death and dying. My goal is to find out if end-of-life care has improved in the last twenty years since the SUPPORT study came out. Death and dying is a difficult topic that deserves more media attention and I am grateful for this opportunity the AHCJ has afforded me to explore this topic in-depth.
JoAnn Mar is a longtime reporter and now producer at KALW-San Francisco. She has worked as an attorney and adjunct professor in broadcast journalism. As a 2016 AHCJ Reporting Fellow on Health Care Performance she will detail the state of end-of-life care for the terminally ill and whether it has changed or improved since a 1995 landmark study found the majority of Americans spent the end of their lives in pain and suffering.
At what point should a reporter consider filing an FOIA request or even suing a government agency to obtain information?
The Justice Department argued that the Centers for Medicare and Medicaid Services has a backlog of some 3,000 requests and may need a decade or more to dig out from under some large cases. Justice said the FOIA office was under “unusual strain” due to the demands of launching the Affordable Care Act.
So does this mean health care reporters are wasting their time filing a FOIA request? The quick answer: Yes, no and maybe.
Sometimes yes: Reporters should resist when officials invoke FOIA, especially when you’re seeking fairly routine information, or types of records the agency has released in the past. Don’t just agree to file that request so it can languish for years. Talk to supervisors and try to negotiate a way around FOIA. Often, the best FOIA request is the one you never had to file.
Sometimes no: Let’s face it. It doesn’t take long to file a FOIA. Several organizations can help if you’re unsure how to compose a FOIA letter. Having a pending FOIA request can keep a channel open to agency officials. It also means you can write about a lengthy delay if you encounter one. And you can’t go wrong planting seeds for future stories, even if they may take years to harvest.
Sometimes maybe: I filed our Medicare Advantage FOIA request with CMS in May 2013. We got nothing, so in May 2014 we filed suit in federal court in Washington, D.C. It took us almost another year, until March 2015, to get any records to speak of – and much of what CMS handed over at first was almost totally blacked out.
Fortunately, U.S. District Judge John D. Bates ordered the government to step up disclosure. Bates said he understood CMS had many demands on its time, but wrote he was “deeply concerned about a proposed production schedule that may take decades to complete.”
Fred Schulte is a four-time Pulitzer Prize finalist who has reporting on Baltimore’s arcane ground rent system, excessive heart surgery death rates in veterans’ hospitals, substandard care by health insurance plans treating low-income people and the hidden dangers of cosmetic surgery in medical offices. He spent much of his career at The Baltimore Sun and the South Florida Sun-Sentinel. He, with the Center for Public Integrity, filed a FOIA lawsuit to obtain financial audits and other documents detailing government oversight of the Medicare Advantage program.
How can journalists go beyond traditional inverted pyramid reporting to tell a story about an event or issue that resonates with readers?
I believe in doing journalistic stories with strong narrative elements. That means you have to know what the narrative elements are before you begin. Ninety percent of good narrative writing is good reporting; 98 percent of great writing is great reporting. The rest of it is just putting those words together. You can’t do the story if you don’t have the raw material. You have to know how to look for and identify strong material.
You have to ask storyteller questions, which are different than institutional questions that are reporting for information. It doesn’t mean they’re bad, but if you think about storytelling questions, you need to work harder to help that person become the storyteller they might not be. Don’t assume people know what you need for your stories, they don’t. Don’t even assume they know how we work. Don’t assume they know why you ask the questions you ask; or why you might need to just sit and watch them for an hour, or take a ride with them in their car and see a tour of their world; tell them.
If you’re going to interview for story, on the phone or in person, the first thing you have to do is explain yourself. What are you exploring? What is your idea or notion or premise about this story? Why are you talking to them? Let them help you determine if you’ve got a central idea or question. Let them know what you’re searching for, and why.
Jacqui Banaszynski (@JacquiB) is a veteran newspaper journalist who teaches at the Missouri School of Journalism, the Poynter Institute and in workshops around the world. In 1988, her series “AIDS in the Heartland” won the Pulitzer Prize in feature writing. This advice comes from her Health Journalism 2015 workshop about narrative writing.
Do you have some tips on shooting video of older people?
In 2007, when GateHouse Media and the Patriot Ledger handed out small digital cameras to reporters so they could shoot videos with their stories, I was excited about learning a new skill and having a different way of presenting the engaging seniors I knew to readers. I expected young people to be at ease with the technology, but I was surprised from the start at how comfortable many older people were with the videos. They had had not grown up with this.
The cameras, at that time Casio Exilim, are very small and unobtrusive. I hold the camera next to my face as we are having a conversation. It can be easy to get up close and personal, and the seniors seem to almost forget the camera is there or that it can actually shoot clear video. I have sometimes shown them clips on the camera when we finish to make sure they understand. In a few cases with several centenarians, I dropped by their homes with the edited videos loaded on my laptop to play for them after they were posted.
My technique is very casual. I ask at the start if I can shoot some video and tell them I use it as a reporter's notebook, so I don't have to take a lot of notes, and that if there are some clips that look good, I might use a brief excerpt on the Patriot Ledger web site. In some cases, the entire interview has been so good that I've posted it. I explain that I can edit the video on the computer and will take out parts that are not good, that they can start and stop or make mistakes and I will remove that part. I find most conversations flow naturally and I have captured some delightful candid moments and expressions. To hear the laughter, or the tone of voice, and see the expressions when wisdom or heartfelt emotions are being expressed is so valuable. And to have witness to how sharp these minds still are at advanced ages is a thrill and I hope a way of combating ageism.
Sue Scheible (@sues_ledger) has been a staff reporter at the Quincy, Mass., Patriot Ledger for 46 years and has a weekly column on aging. In a recent video, an 85-year-old woman explained what she’s learned about talking to doctors.
How can journalists make the most of their time and energy when covering a scientific or professional conference?
Before you attend, peruse the online or paper conference agenda. It will list topics, speakers and occasionally the work or university affiliations of speakers. Sometimes the program agenda is organized by category, which could include business, science, clinical, social practices or behavior. Look not only for what interests you, but what you can turn into stories.
Mark Taylor is an independent health care journalist based outside Chicago. Taylor was legal affairs reporter for Modern Healthcare magazine and writes for newspapers including The Philadelphia Inquirer, Chicago Sun Times and Gary (Ind.) Post-Tribune. He is a former Kaiser Media Fellow and a co-founder of the Association of Health Care Journalists.
What advice do you have about finding local angles for research that may not otherwise seem pertinent to your audience?
We typically don’t report studies that include a relatively small number of participants and do not involve local researchers. But the findings were so striking from the 138-patient North Carolina study published in the Annals of Emergency Medicine — doctors were apparently missing widespread malnutrition among elders in the ER — that it begged for attention.
To put our own stamp on the story, I tapped the expertise of a Boston-area nonprofit that specializes in Meals on Wheels and other services for seniors. The executive director was well-steeped in the everyday problems encountered by local elders, and that helped me to explain to readers how impaired mobility and lost connections to the outside world for many elders can lead to depression, loss of appetite and ultimately malnutrition. That the nonprofit was launching a program to battle depression among home-bound seniors helped further localize the study story for our readers and distinguish it from a more general story about the study they may have seen elsewhere.
When reporting stories, I typically ask service agencies (or physicians, medical centers, etc.) for help in connecting with the type of patient who is involved in the study we are writing about (in this case a senior who faced mobility and nutrition hurdles — and was willing to be interviewed and photographed!) This especially drives home that local, “real person” voice in a story, and gets beyond the general study findings, particularly when other news outlets may be covering the same study.
Boston Globe health reporter Kay Lazar (@GlobeKayLazar) put a local spin on a study out of North Carolina that highlights the problem of malnutrition in the elderly, an issue often overlooked by emergency department physicians when older patients are brought in.
How can reporters maintain emotional distance in storytelling when dealing with issues of death and dying – especially when interviewing patients or family members?
It’s easy to overdo the emotion when crafting a story involving death, and radio, as a medium, can really gin up the tears when it wants to. I tried not to turn this series into a saga. While these pieces include the voice of people facing fatal circumstances, the tape I include in the work captures humans talking like rational, funny, thoughtful humans. At the end, we should all be so lucky to have that state of mind.
Todd Bookman began as a news correspondent with New Hampshire Public Radio in 2009, and took over the health beat in 2012. Before his start in journalism, he spent nearly a decade in the nonprofit world, working with international development agencies and anti-poverty groups. He holds a master’s degree in public administration from Columbia University.
In writing about your grandmother, how did you decide it was worthwhile to go public about her cognitive impairment and address privacy concerns?
In writing about the health issues of various family members (and myself) over the years, I have discussed privacy concerns, both with family members, and editors on the stories. In stories that involve my children (five adults now, one 11), I always talk to them first. With my children, I explain what it is I hope to do – reach and inform others who face similar problems, and help them to avoid the pitfalls or terrors we faced. If there are particular issues they do not want revealed, I always honor that. No question.
In terms of the articles about my grandmother and her cognitive impairment, I discussed privacy concerns with my editor at the Post. They had, at one point, wanted her photo, but I felt that would really invade my grandmother's privacy. We agreed, in the end, that by not naming her or where she lives, we shielded her. It helps that our last names are different, too. And the articles (one in the Post and one on MariaShriver.com) do not detail the many specific issues and health conditions that afflict her, just the general diagnosis, and ways to respect, honor, and communicate with people who have dementia. I actually wound up talking about the issues of my grandmother's privacy most with my mother, and in the end, we agreed that an opportunity to help others communicate better with loved ones outweighed the risks of revealing that my grandmother has a cognitive impairment. In fact, many people responded to the article in the Post, and continue to print it out for family members who are facing the same challenge of communicating.
The article on MariaShriver.com is a tribute to my grandmother, and honors all the ways she strengthened my life and my children's. It also discussed what I learned about communicating with someone who has dementia, and describes my efforts to stay in touch with her, even though she is so very far away. Again, it received many positive responses and, I hope, gave others a way to communicate more with their loved ones.
I also wrote more recently about my brother-in-law's death and our decision to name him as an organ donor. In this case, his brothers (my husband and his brother) as well as his daughter, all agreed that Vince would not have minded sharing his story, with the aim of informing and helping.
Janice Lynch Schuster is a poet, essayist, and nonfiction writer who freelances for many publications and websites. She writes about health issues for the Altarum Institute, a nonprofit health systems research and consulting organization.
How do you give a story more depth and meaning if you only have anecdotal evidence to go on?
At C-HIT, we've been following the problem of patients who are placed on "observation status" during multi-day hospital stays for the last few months – mainly because that status means that Medicare won't pay for their nursing home care after discharge. A lot of our reporting has been anecdotal.
Fortunately, the OIC [U.S. Department of Health and Human Services’ Office of Inspector General] did a little-noticed report on the topic that caught my eye – as usual, lots of data and Medicare cost information that might not be of interest to our readers, but with a few statistics that leapt off the page: Namely, confirmation that hundreds of thousands of Medicare patients had long hospital stays that were considered outpatient or "observation" stays, which deprived them of follow-up nursing home coverage.
Being able to put some numbers on a largely anecdotal problem is one of the happy moments as a health reporter. We write a lot about flaws or glitches in the health care system that are hard to quantify, leaving the reader with the 'sense' that a problem is widespread, but no data to actually back that up. Ninety-nine percent of the OIG, GAO, CMS reports that come through my inbox get scrapped – but it's worth looking at all of them for that 1 percent that help give context to an issue!
You’re launching a new blog on aging. How are you going to approach that?
Barbara Peters Smith writes about aging and health issues for the Sarasota Herald-Tribune in Florida, focusing on the major shifts occurring as the U.S. baby boom generation reaches retirement age. She spent most of her career as an editor at newspapers in Santa Barbara, Calif., and Gainesville, Sarasota and St. Petersburg, Fla. Two years ago, when she turned 55, she decided to challenge herself professionally and return to reporting. She is pursuing a master’s degree in American studies at the University of South Florida in Tampa.
Recently I leaped at the chance to divide my health and aging beat with another reporter and concentrate more intensely on the pressing issues that concern baby boomers and their elders. After attending the American Gerontological Society meeting in Boston last year, I wrote a series of analyses about how retiring boomers might reshape Southwest Florida; but aside from occasional stories on horrific nursing homes or Medicare costs, I had not been able to give the aging beat the attention it deserved. With a new health reporter finally on board, I decided to go public by renaming my blog (it was “Pulse;” now it’s “New Wrinkles”) and beginning a more overt dialogue with the large segment of our readership that I’m writing about. Excerpts from the online blog will be reprinted in our Tuesday Health Fitness tabloid, to reach the many elders who still consume their news in paper form.
Sarasota is a retirement community, with almost a third of our residents 65 and older. Not surprisingly, these are our most devoted and attentive readers of the paper product – and I suspect that’s true in just about any U.S. market. We have always exercised news judgment with these readers in mind, and for a time we had a reporter who wrote exclusively about aging – who is now, fortunately, my editor. When layoffs happened and our beats collapsed, we lost that focus, and I want to make sure our readers know we have it back. So I wrote an introductory blog announcing our intentions, and [this] week will be attending this year’s AGS meeting in San Diego, blogging heavily for a week to re-establish ourselves as an authoritative voice on aging.
With 20 years at this paper, I’ve met lots of community elders – which means I have lots of great sources who have passed away, and there is a constant need to refresh the supply. When older readers call me with a problem – and they do – I try to take some extra time to chat about other things and ask if I can call them back sometime to talk about Social Security or Medicare or whatever. There’s a fine line here between outreach and exploitation, and I try to be very vigilant about not taking advantage of readers’ trust. That can mean very long conversations with people who wind up not letting me use their names, but I see that as part of the gig.
My biggest challenge will be to write about aging in a way that engages boomers as well as elders – while also letting other generations know (in a nonthreatening way) that these issues involve them as well. I’m finding that addressing boomers as their parents’ caregivers is a useful segue to helping them focus on their own retirement planning. And even though much of what I am writing about – from elder fraud to home care – revolves around questions of money, my personal goal is to let the humanity of my sources shine through their stories, so that readers of all ages can relate.
What do compounding pharmacies have to do with aging?
Arlene Weintraub has covered science and health for more than 15 years and is the author of Selling the Fountain of Youth. She has contributed a tip sheet on covering the anti-aging movement.
Hormone replacement continues to be a hot topic among aging baby boomers. When the Women’s Health Initiative studies raised questions about the safety of popular menopause remedies such as PremPro, millions of women turned to anti-aging doctors, who prescribe “bio-identical hormones,” which are concoctions of estrogen and progesterone that are made by largely unregulated compounding pharmacies.
Even though many of these products contain hormones found in menopause remedies that are made by large, highly-regulated drug companies, they don’t have to include the same warning labels that those products do — a continuing source of annoyance for the U.S. Food & Drug Administration, which has tried unsuccessfully to put a halt to improper marketing claims by compounding pharmacists.
The FDA’s continuing efforts in this area are well worth following.
[Editor's note: In the aftermath of the current meningitis outbreak traced to a compounding pharmacy, at least two legislators have said they will draft legislation to give the FDA more oversight of compounding pharmacies.]
You received 90,000 records housed in seven separate databases after the government responded to your request for data about individual nursing homes’ use of antipsychotic medications. How did you make sense of all that information?
Kay Lazar discusses the data analysis for "A rampant prescription, a hidden peril," which tracked antipsychotic use in nursing homes. The Globe is making available to AHCJ members two sets of raw data obtained from CMS so that members can do their own analyses.
“My colleague, Matt Carroll, spoke with statistics experts to ensure that the way he was planning to analyze the data was sound. He merged the material into one database and sorted the nursing homes by the percentage of patients who received antipsychotic drugs contrary to CMS recommendations. The homes were broken into quartiles and a median was calculated for each quartile.
I talked to experts who specialize in nursing home research to pinpoint the characteristics we should focus on in our analysis, ultimately choosing staffing levels, method of payment (Medicaid vs. Medicare), and percentage of residents reported by staff to have behavior issues.
We had some false starts.
After the first round of analysis, we realized CMS inadvertently sent 2005 data twice, but labeled one of the years 2007. They sent corrected data, and Carroll re-did the analysis.
Something still didn’t look right. Turns out the agency sent us raw staffing data, but told us it was already calculated in a pre-set and rather complex formula. (CMS counts the number of hours each staffer works over two weeks, then divides that by 14, then divides that by the total residents of a home to compare facilities’ nursing hours per resident, per day.) They apologized, sent the formula, and Carroll re-did the analysis again.”
Why did you change plans and decide not to rely on cause-of-death mortality data from the U.S. Centers for Disease Control and Prevention in your investigation?
There were a couple of reasons. While we’d made a list of causes of death that we considered suspicious, all of those causes of death could also have been the result of innocuous circumstances.
For example, a nursing home patient who died of malnutrition may have been killed because staffers failed to adequately care for the patient. Or the patient may have suffered from a fatal disease that made it impossible to eat and digest food.
With the CDC’s records, it’s impossible to tell what really occurred.
How did you find the information you used to create 'Your Future Selves,' an interactive element that lets people peer forward into time and get a sense of what aging might mean?
Michael Keller discusses his work on Brave Old World, produced by students from Columbia University’s Graduate School of Journalism. (Read more about the project.) He’s a staff member at The New York World, a new digital project.
The biggest problem in my workflow was finding rich data for the interactive. We had a pretty tall order, too. We wanted data segmented at least three ways: by age, sex and race.
We found out that many organizations only tabulate data across two dimensions. For instance, the CDC can tell you how many Asian men have a certain disease and they can tell you how many women over 65 have it, but they can’t tell you how many Asian women over 65 have it.
The census keeps better data but finding the full data set required getting to know the high level support staff who were able to direct us to their larger repository.
We spent at least six weeks in data collection mode, which was much longer than we had budgeted for. To get our health data, for instance, we got in touch with a well-respected data journalist who tipped us off to a database at the NIH that was much better than the CDC’s.
To use this data, however, we had to learn how to query it, which took a couple of weeks and we consulted with the Columbia statistics department to make sure our methodology was sound and to help us to calculate standard errors on our findings to verify our results.
How did you find the people you featured in this story?
Jan. 6, 2011 Finding the right interview subject to lead a story – someone willing to publicly share his or her deepest feelings and personal problems – can be challenging. It took some digging to come up with the right subjects for a recent story I did on long-term care planning. I found several people whose situations fit the bill, but they didn’t want their stories written up in the newspaper.
What worked for me was reaching out to social service agencies that act as resource centers for seniors in crisis, including two area agencies on aging. The agencies were willing to send out an e-mail blast to their caseworkers asking for recommendations for possible interview subjects. (Sometimes a request posted on a professional or patient listserv does the trick.) I made sure everyone knew my deadline.
I ended up with a mother-son pair who were perfect for the story. They were happy to be interviewed and photographed and were open about their situation. Even though their caseworker had already bailed me out, he cheerfully went the extra mile and made time to do a phone interview with me, the cherry on top of the sundae.
What would you advise reporters interested in finding stories about troubled nursing homes in their communities?
A lot of the information on nursing homes is accessible online. For example, you can look up any nursing home in your area on the Center for Medicare and Medicaid's website. The site provides access to inspection reports and also rates nursing homes against each other. With my story, I was unable to use this site, because it is only for nursing homes, not assisted-living homes.
For reporters who want to find out more about assisted living, I think the best route to take is getting in touch with the long-term care ombudsman (or equivalent) in your area, and they are often a treasure trove of information, and also can provide good, quotable perspective for a story.
[Editor's note:AHCJ offers the Nursing Home Compare data as a series of spreadsheets, allowing the user to filter, sort and use other analysis tools to compare more nursing homes in a more sophisticated way. Obtained from CMS and updated when the agency updates its data, the spreadsheet files include only more serious nursing home deficiencies and star ratings for nursing homes in a format to easily sort and compare.]