Joy Victory is Deputy Managing Editor of HealthNewsReview.org. She tweets at @thejoyvictory.
This weekend members of the American Society of Clinical Oncology (ASCO) will hold their annual meeting in Chicago.
It’s one of the largest scientific conferences in the world, with thousands of studies being presented on new ways to prevent, detect and treat cancer. But those presentations are often very limited in the time provided and the substance delivered.
To drum up publicity beforehand, the ASCO public relations team sends out batches of news releases about “high-impact” research results that are embargoed until the conference happens. This means that journalists are forbidden to publish stories about the research until the embargo lifts.
These news releases–and the embargo process–undoubtedly shape what the general public will find out about new cancer research, as we discussed in our overview piece “ASCO 2018: How a major medical meeting uses embargoes to shape the news, and what the consequences may be.” In some cases, as we also pointed out, the information that reaches the public about this research will be incomplete and imbalanced.
This process will kick into high gear over the next few days, as oncologists descend on Chicago and the journalists rush to break news before their competitors. Today, the first day of the meeting, ASCO’s media team is featuring studies involving disparities–how geographic, racial and gender differences affect quality of care. We applaud ASCO for focusing on research that may not necessarily generate “breakthrough” headlines, but which undoubtedly impacts patient care.
The meeting runs through Monday, but the chatter on Twitter #ASCO18 already has been brisk. We think these three tweets stand out for their refreshing counterpoints to the excitement that sometimes gives way to hype:
1. It’s all preliminary data
I’m seeing many tweets from MD colleagues about abstracts at upcoming @ASCO Annual Mtg #ASCO18 that suggest results represent new std of care. Respectfully suggest we all temper ourselves & await full presentations, discussions, & peer-reviewed pubs.
— Tatiana Prowell, MD (@tmprowell) May 18, 2018
Prowell, a breast cancer specialist, is right to advise caution. Only top-line summaries of research–known as abstracts–will be presented at ASCO18.
Without seeing the full study, important things are impossible to ascertain, like the rate of adverse events. That lack of information is good for drug and device companies hoping for positive social media chatter and press coverage, but bad for people who want to know the real harms and benefits.
And since the full findings have not been peer-reviewed or published, they should be considered preliminary. Some studies presented at ASCO18 may never get peer-reviewed or published, and if they do, they may look very different than the abstracts.
2. The problem of #financialtoxicity
Thread with help of colleagues identifying lots of high priced treatments with minimal benefit. Thanks everyone. And keep adding! 👇 https://t.co/xKVyAskky2
— Vincent Rajkumar (@VincentRK) May 26, 2018
A new report shows that every new cancer drug that debuted in 2017 cost more than $100,000. For that price, one might expect that these drugs would guarantee many cancer-free years of additional life, but they rarely do.
That’s why Mayo Clinic blood cancer specialist Vincent Rajkumar, MD, asked for examples of expensive drugs with minimal benefit. He and other have taken to calling this #financialtoxicity.
For those curious to know more, this paper is a great summary of the problem and how it extends beyond new immunotherapy drugs–such as using chemotherapy for patients at the end of life, or CT scans and certain blood tests for ovarian cancer.
As we’ve learned after reviewing thousands of news stories about medical interventions, the cost of the treatment is rarely discussed. For cancer-related stories, we consider this a critical error.
3. A lot of hope…and a lot of hype
With #ASCO18 coming up in a few days, it’s time to remind journalists & PR folks of this excellent paper on the overuse of superlatives in cancer research. I wish our drugs were as good as our hype. Wish they saved my friends Scott, Marie & Dave. https://t.co/zYah8LvRoq
— Liz Szabo (@LizSzabo) May 27, 2018
Most new drugs or research findings will only have a small impact on cancer patients’ lives. Yet that reality is often not reflected in news releases and news stories, leading to misleading information about cancer treatment.
What kind of words are we talking about? As identified in the paper Liz Szabo mentions in her tweet, it’s words like “breakthrough,” “game changer,” “miracle,” “cure,” “home run,” “revolutionary,” “transformative,” “life saver,” “groundbreaking,” and “marvel.”
As HealthNewsReview.org publisher Gary Schwitzer suggested three years ago, we’d all be better served if these words were removed from the lexicon of cancer news:
“Words matter. Framing matters. Hype causes harm. Let the evidence speak for itself. Good evidence doesn’t need sugar-coating with superlatives.”
Finally, it’s been 16 years since a Dartmouth team published an important paper on this topic, “Media Coverage of Scientific Meetings: Too Much Too Soon?” Its message applies more than ever today to the ASCO18 meeting, and others. Excerpts to consider:
“Many of the abstracts receiving media attention have weak designs, are small, or are based on animal or laboratory studies; 25% remained unpublished more than 3 years after the meeting. Interestingly, presentations that receive front-page coverage are no more likely to be published than abstracts receiving less prominent coverage. …The meetings serve a public relations purpose, generating support for the meetings’ sponsors and for the agencies funding research, and drawing attention to individual investigators and their institutions. …The current press coverage of scientific meetings may be characterized as “too much, too soon.” Results are frequently presented to the public as scientifically sound evidence rather than as preliminary findings with still uncertain validity. With some effort on the part of meeting organizers, journalists, and scientists, it will be possible to better serve the public.”