The role of a journalist should be to ask questions at the pivot or tension between two widely held beliefs. Similar to politics, there are many shades of grey. For example, consider health policy that may intentionally or unintentionally highlight socioeconomic--based correlates of health.
Or industry often vilified in many discussions of cost. We are now evolving "value" based reimbursement strategies that in one tome characterize high-value care (although cost is often left out of the discussion) but also prides itself on the amount of incentives up for grabs if care strategies align with the bottom line--established at the payer, provider, and government level.
Collaborative projects for data collection are being implemented and hopefully will grant access to credentialed members of the press to help stimulate the narrative beyond the walls of academia and industry. If the patient is authentically invited to the table--access will be required.
In the fiercely competitive pharmaceutical industry, collaboration might seem to be a bridge too far. But there are promising precedents, like Project Data Sphere. In this industry-led platform, launched in 2014, pharmaceutical companies have agreed to share data about nearly 30,000 cancer patients to help develop better clinical trial designs and identify cohorts of patients who don’t benefit from standard chemotherapy. Founding members included Amgen, AstraZeneca, Bayer, Celgene, Janssen, Memorial Sloan Kettering Cancer Center, Pfizer, and Sanofi. If these competitors can share data, so can others.--STAT
Many journalists, myself included, have access to public databases as well as curated data sets available behind paywalls that lift for our review.
Patient participation in “big data” has contributed to many of the remarkable advancements in cancer treatment over the last decade that might otherwise have gone undiscovered. Take immunotherapy as an example. Never before has the oncology community witnessed such a rapid development in treatment. Clinical trials identified personalized treatments for previously deadly tumor types that improved survival with lower toxicity for some patients.--STAT
The patient is theoretically marketed as partners in shared-decision making but are the outcomes censored and marketed with profit and business interests ahead of their own? In the absence of accessible raw-data for rigorous statistical review--we often overstate the outcomes--and under-report the risks.
The DrugAbacus interactive tool--although well meaning--seems a wee bit advanced for your average patient unaware of how we evaluate health outcomes when discussing comparitive drug regimens.
Here is the actual dashboard and queries directed at the end-user, a potential patient looking for a regimen aligned with their own priorities and concerns.
In all the noise--enter in the direct to consumer adverts. Where are the voices to clarify the distortion?
The voice-over said, “Opdivo significantly increased the chance of living longer versus chemotherapy.” The wording may be a little clumsy, but the velvet-voiced narrator made his point, bolstered by actors portraying lung cancer patients playing with babies and watching Little League games.
“A perfection of means, and confusion of aims, seems to be our main problem.” Albert Einstein
Bonny is a data enthusiast applying curated analysis and visualization to persistent tensions between health policy, economics, and clinical research in oncology.