by Carolyn Thomas ♥ @HeartSisters
“Don’t just publish another paper. Let’s DO something!” That feisty challenge to her academic colleagues comes from Dr. Cindy Blackstock, expressing her frustration in a University Affairs interview.
The McGill University professor in Montréal is internationally known for her work in child protection rights of Indigenous families. But her frustration can readily apply to medical research, too – where “doing something” seems barely on the radar.
I’m not a research scientist (although I did spend 20 years of my life living with one – does that count at all?) I’m merely a dull-witted heart patient who somehow managed to survive a misdiagnosed “widow maker heart attack” – and would really love to help other women avoid the same fate.
Since 2009, I’ve been teaching myself how to translate research studies on women’s heart disease for both my readers and my Heart-Smart Women presentation audiences. That’s how I began to suspect that getting these studies accepted for publication in medical journals is the main goal – not changing an unacceptable status quo for patients.
For example, we know that evidence-based practices that are researched, published and endorsed by medical experts can still take on average 17 years to finally become part of medical practice.(1) That’s a preposterously unacceptable wait. And it doesn’t count those published studies (estimated at over 80 per cent) that never make it to accepted practice at all.
This month, a Medical News & Perspectives article in the Journal of the American Medical Association explores how a relatively new field called implementation science seeks to narrow that shockingly wide gap between research on improved medical practices and their eventual routine use out in the real world with patients like us:
“Historically, this research-to-practice gap, and whether these findings actually translate into public health impact has not been the concern of academic clinical researchers.
“The traditional academic business case for career success has primarily supported conducting studies on highly selected, typically academic medical center-based populations, and publishing in (ideally) top quality academic journals.
“But this paradigm for academic success has justly come under criticism in recent years.
“Funders of biomedical research have been concerned over the lack of public health impact of their research dollars. And decreasing research funding worldwide has led to debates over the trade-offs between investing in more conservative projects with predictable results, versus more innovative research including projects involving more real-world samples that could result in greater public health impact (2).
That last line (“conservative projects with predictable results” ) is precisely what I and other women have been noticing for years.
As my regular readers already know, I often feel like I’m reading the same journal article – over and over. Different lead authors, different sleep-deprived grad students, different universities, different publication dates, different medical journals – but essentially yet another “ain’t it awful?” study concluding that female heart patients are significantly more likely to be under-diagnosed compared to our male counterparts, and – worse! – under-treated even when appropriately diagnosed (as if we don’t know that already).
One fine day, for example, I was chatting about academia’s stressful “publish or perish” hamster wheel culture with my heart sister Laura Haywood-Cory. Laura is a survivor of a SCAD heart attack at age 40, and – like me – a graduate of the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic.
An exasperated Laura asked me, “Do we really need yet another study that concludes:
“SUCKS TO BE FEMALE – BETTER LUCK NEXT LIFE”?!
Well, Laura, apparently we do! Because these are the research papers still being churned out year after year.
The only nod to Dr. Blackstock’s challenge (“Let’s DO something!”) might be the cursory “Further study is required” added at the end of almost every paper’s conclusion. In fact, saying these four words might make study authors feel like they’re “doing something” to help prevent women of the future from being under-diagnosed and under-treated – when in fact what they’re doing is adding another published paper to their own CVs.
Meanwhile, Dr. Blackstock’s bold call to “DO SOMETHING!” demands some radical changes, including these suggestions:
“Don’t just publish another paper; 85 per cent of journal articles don’t get read.
“Let’s do something and express ourselves in ways people can actually understand. And listen to the lived experience, get behind the community.
She also urges academics to move away from the “usual, antiquated notions of knowledge-transfer” such as presenting posters or giving talks at conferences. She believes that, while this work might be considered important, “it’s no longer enough.”
If you think Dr. Blackstock might be exaggerating her claim that 85 per cent of published journal articles are unread, think again. Veteran cardiologist Dr. Milton Packer bluntly confirmed that estimate, writing in Medpage Today:
“Top-tier medical research is really hard, but in the past, the effort was worth it if you could have an impact on clinical practice.
“But now, the situation is so bad that my research collaborators routinely send copies of their recent publications to a close circle of friends, just to make sure that someone knows about the publication of their work. It’s about avoiding oblivion.
“But if authors are just participating in a tiny self-contained community whose members simply talk and listen only to each other, then what is the point?”
Now, here’s a real-world example of how implementation science can work.(3)
Colorectal cancer is the second leading cause of cancer death in North America. Doctors recommend that any patient with abnormal results from a take-home colon test (the fecal immunochemical test known as FIT) should be booked early for a colonoscopy screening procedure in order to help confirm or rule out this potentially deadly cancer.
Yet according to University of Washington gastroenterologist Dr. Rachel Issaka, only half of these patients – especially those from historically under-served populations – who have abnormal FIT results will actually have a follow-up colonoscopy within a year of the test. Dr. Issaka wanted to change this alarming reality.
So she turned to implementation science for help.
She and her research team asked patients, clinicians, and other stakeholders about possible barriers to booking a follow-up colonoscopy – and more importantly, suggestions for possible fixes to address the barriers. They heard a variety of responses – from fear about the colonoscopy procedure itself, to difficulty navigating complex health systems.
For many patients, however, the surprising obstacle they revealed was simply getting a ride home after the procedure, as Dr. Issaka explained:
“For people who lack social connection, transportation is a significant barrier. Because most people are sedated for a colonoscopy, they cannot drive themselves or take a bus home afterward.”
And as her colleague Dr. Bryan Weiner observed at the time:
“I do think that white/high socio-economic clinicians just have no clue that there are people out there who lack transportation options.”
Their findings led to a pilot program that now enables the colonoscopy healthcare team to contract with a local rideshare company to arrange safe transportation home for patients screened at Harborview Medical Center, one of seven safety-net hospitals in Seattle. A member of the team makes sure that patients who need a ride home after colonoscopy get into their rideshare vehicle safely, and then tracks the ride home. Dr. Issaka adds that “many patients have told us they could not have done their colonoscopy had it not been for this program.”
Just as Dr. Blackstock urged her own research colleagues, the Seattle team was not only determined to DO SOMETHING – but also to CHANGE SOMETHING that could make an actual difference in the lives of their patients. For many, this change could be as simple as helping them get a ride home from the hospital.
While writing this, I was repeatedly reminded of Mayo Clinic endocrinologist Dr. Victor Montori and his wonderful little book “Why We Revolt: A Patient Revolution for Careful and Kind Care” . I’m thinking that Dr. M. would appreciate how the concept of implementation science is a true triumph of “careful and kind care”.
I want to be hopeful about the concept of implementation science. The University of Washington calls it “closing the gap between what we KNOW and what we DO”. I suspect, however, that convincing academics to embrace this model will require a seismic culture shift within an arguably entrenched academic tradition.
But as Dr. Blackstock warns:
“Academia and activism should co-exist. Academic freedom provides us with a space to stand in the wings in a way that’s not available to other people. We’re in a very privileged space to do this kind of activism.”
.
1. Balas EA et al. “Managing Clinical Knowledge for Health Care Improvement”; Yearbook of Medical Informatics. Schattauer: Stuttgart; 2000. pp. 65–70.
2. Bauer MS, Damschroder L, Hagedorn H, Smith J, Kilbourne AM. “An introduction to implementation science for the non-specialist.” BMC Psychol. 2015 Sep 16;3(1):32.
3. Rubin R. “It Takes an Average of 17 Years for Evidence to Change Practice—the Burgeoning Field of Implementation Science Seeks to Speed Things Up.” JAMA. April 05, 2023.
♥
Image: Gerd Altmann, Pixabay
NOTE FROM CAROLYN: My book “A Woman’s Guide to Living with Heart Disease“ reads like the“Best Of” Heart Sisters blog archives. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (if you use their code HTWN , you can save 30% off the list price).
Q: How do you imagine implementation science improving our health care?
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See also:
– More resources about implementation science: Click here
Heart Sisters 
I’d like to present another view….I post in my social media groups when I am participating in another medical study. I was part of the “Paradigm” study for heart failure. This is conducted for over 2 years and was so educational to me as a Nurse and as a participant. I was extremely fortunate. I did receive the study medication which has benefitted and extended my life. Since then I have had the opportunity to participate in studies at the Utah Vascular Research Lab in Salt Lake City, Utah. These are typically short term. I am always fascinated to talk with the staff about what else they are working on and the benefits that hopefully will be derived. The last study involved non-invasive testing for microvascular disease and response. Definitely of interest to me ! I am willing to be involved because I have the time and am convinced of their benefit. My greatest hope is that our daughters and granddaughters will not have to experience what I have….I want physicians to be able to better understand the disorders physiologically and when having to make a prescriptive choice be able to make a choice that is based in sound research.
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Hi Linda – first, congratulations on your willingness to participate in cardiac research. We know that women are notoriously under-represented in cardiac research for many reasons, so your participation is a gift for researchers. In the industry-funded PARADIGM-HF study, for example, only 21% of your fellow study participants were women (not at all uncommon in most cardiac studies, unfortunately). This has been cited as an important study limitation, essentially because although women with heart failure/reduced ejection fraction (the type of HF studied here) – do live longer than men, their additional years of life are of poorer quality, with greater psychological and physical disability.
Academic research-initiated study topics (and the importance of initiating studies whose results will actually be implemented in real life – as in the Seattle example) were the focus of this post – and of Dr. Blackstock’s messages to her fellow academics – rather than Industry-funded drug trials.
As a Mum and grandparent, I share your hope for our daughters and granddaughters too!
Take care, stay safe. . . ♥
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Carolyn, thanks for another excellent article. The problem isn’t limited to studies of women, it extends to economic level and ethnicity.
The example of needing a ride home is one that wouldn’t occur to most medical professionals. When I needed an indoor exercise option at the start of the pandemic, my cardiologist recommended a Peloton. Those things are way, way expensive thank you very much.
I worked many years in a clinic for low income patients. The primary reason most people missed appointments was transportation. Once an internal medicine resident actually told me he recommended a newly diagnosed diabetic man who was homeless, go to Barnes and Noble to get a book on diabetes. Poor guy, I stopped short of skinning him.
If you haven’t been poor, take time to learn about the barriers. Putting my soap box away now.
Sara
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Hi Sara – thanks for getting on that soap box! You’ve raised two terrific examples of what Dr. Weiner meant (as quoted in this post): “I do think that white/high socio-economic clinicians just have no clue!” I was reminded of the new PCKS9-inhibitor cholesterol drug launched in 2015 (and NOT covered by most health insurance plans) that cost $14,000 a month. Imagine doctors telling their patients that with a straight face.
I hope other docs read your two examples here, and thus learn how to “get a clue” if they don’t have one. Your work experience in that clinic was a valuable education that most likely made you a more understanding and compassionate staffer.
Many volunteer organizations and community centres offer free rides for medical trips – all doctors should have a list of those kinds of useful resources for those who can’t afford either Pelotons or new books.
This is why I loved writing about that ‘ride home from the hospital’ pilot project in Seattle – it is such a practical and straightforward way to address a common obstacle to good care – and all they had to do was to ask real patients why they hadn’t booked their procedures.
Take care, thanks for this! ♥
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Just have to respond to the colonoscopy part of this article:
I’m normally a compliant patient, I think, but what holds me back from doing it one of these days is the prep for it. When I had mine done, I had to drink a small bottle of something they no longer sell, apparently — phospho-soda or something like that. I found that I could mix this with ginger ale, as was suggested to me by the doctor, and it was easy to tolerate. A year or two later my husband had to have his first colonoscopy. By then they had discontinued what I took and he had to take Miralax, which works perfectly well.
Fast forward ten years for us both. For some reason he had his second one before I did and when I went to pick up the prep medicine for him at the pharmacy I was shocked when they gave me a gallon jug with medicine I think he had to mix with water. He was expected to drink the entire gallon over the course of a certain amount of time and it was not pleasant. He forced himself through it — he never complains about anything. But I said no way am I doing this — what was wrong with either the phospho-soda or the Miralax? So after that I refused to do my second test. Later I tried the at-home test and it came out negative.
If medical science wants us to cooperate with something like a colonoscopy, they need to make their expectations for the prep work reasonable! I had no problem with the doctor (he was fantastic, called me himself with the results), the colonoscopy itself (I even asked to be semi-awake so I could watch — it was fascinating to see inside my body! — I saw him remove two polyps), or getting a ride to and from the test with my husband or my son perhaps — but drink a whole GALLON of a yukky laxative?! I don’t think so!
I think I might be becoming more non-compliant as I get older. I just don’t want to subject myself to anything that is unreasonable anymore.
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Oh Meghan! That PREP! It is indeed dreadful! I was gagging trying to choke down the last of my prep stuff. My worst experience years ago was the time I showed up for the test – but it turned out that I was a WEEK EARLY for the appointment! The receptionist said to me: “Oh no. . . Did you do the full prep?!” Oh yes. I did! Clean as a whistle, and then had to do it all over again the next week for my real appointment. 😦
BUT . . . As distasteful as this whole experience was, not once but twice in one week (yikes!) – I watched one of my oldest friends die of metastatic colon cancer after five long years of surgery/chemo/radiation every year as the cancer continued to spread. It was the worst experience ever – so I would do just about anything (including colonoscopy if I ever have an abnormal FIT test) to avoid the suffering I witnessed during those five years. In the general scheme of things, a colonoscopy is truly nothing compared to being diagnosed too late with the cancer it screens for.
Take care, stay safe. . . ♥
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That damn colonoscopy prep was called Go Litely when I took it. I didn’t make this up! And it’s why I stretched out the recommended years to 12 before doing this again. Lied about whether I finished the whole damn gallon the second time. Stretching out to maybe 15 before I succumb again and by then they better have a prep that isn’t so stressful.
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I have had a different prep for each time I had a colonoscopy. Last time they wanted me use something other than the Miralax and I asked why I couldn’t use the Miralax again and though the nurse was surprised by my question, she said yes, that would be fine and she’d send me the info on that instead. Seems there’s no real reason for why they choose one prep over the other.
So I agree, advocate and question for yourself.
In general though, I agree completely about research needing to be put into practice. This is true in all medical fields including speech, occupational and physical therapy.
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Thanks Nancy for stressing the importance of implementing research studies into common practice in ALL areas of medicine! 🙂
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Hi Carolyn,
The problem with the medical community is very simple and overwhelming clear, one that today’s society thinks has already been addressed.
Because of the fact that we are women, the medical community at large doesn’t take note of how we feel or of the symptoms we present with. They look at women as small versions of men, and not as being different medically.
Internally our structure is different and yet they want to look at us as being the same. Our bodies can tolerate higher levels of stress and pain because our neurological systems aren’t the same. My cardiologist took my case when I entered Emergency. Because of my test records he had no clue about the patient laying on the table. He told me outright that I was the last patient he expected to see on the exam table – I’d felt no pain and had told him I was having an asthma attack.
The medical community put the tag ‘women’ on us and automatically feel that we over-exaggerate and dramatize issues. There would be better care if they removed the labels of “female or woman” and replaced it with ‘patient’. Men are treated as case numbers with symptoms. Society still looks at women as being less then men. They discount our symptoms as emotions and even women doctors are taught to treat us the same way. They are judging the book by the cover.
Robin
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Hello Robin – I think it’s even more basic than that. Even the lab animals used in cardiac research are male animals. Women are notoriously under-represented in clinical trials that test the drugs we will one day be prescribed, or the treatments that will be recommended for us, or even the diagnostic tests that will help to diagnose us in the first place. All of these have been developed and researched for decades on (white, middle-aged) men. The studies are fascinating: in some case studies, for example, just changing the name on a medical chart that a doctor is asked to review (from a typically male name like “Peter” to a typically female name like “Elizabeth”) results in different ways that participating physicians decide on diagnoses and treatment recommendations. Same descriptions, just the person’s name is changed – but for many docs that’s enough to make them change their diagnoses.
I don’t think replacing the words ‘female’ or ‘woman’ with the word ‘patient’ would help matters – because that’s essentially what we have now. Healthcare professionals say “patient” – but what too many have been trained on is what works in MEN. I believe that instead, we need to start focusing on medical schools with educating young students very specifically on how women differ from our male counterparts in symptoms, risk factors and appropriate treatments.
Take care, stay safe out there. . . ♥
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Carolyn,
I see we are on the same page and I’ve known this since I was in high school. Most think when they see my name that I’m male. I’m native and was named after a bird. One of my best friends in High School was looked at strangely, but subs when the teachers were out because of her name. They would say that we were playing games because we sat together. Her name was Bruce, her father named her because he didn’t want her to have problems. Her father was a brain surgeon and said it would give her a fair chance in life. She had brothers and said everything is in a name.
But I think our parents were smart. I had a friend in the same class named Marion and it was a guy, the substitute would just send us to the office. Even when the teacher left our genders beside our names. Society is super twisted.
Robin
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