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Improve Clinical Trials Information – Patients, Caregivers, Advocates
Improve Clinical Trials Information – Patients, Caregivers, Advocates (Archived)
Have you been frustrated with how difficult it is to find clinical trials information? Do you have an idea that would help patients have a more informed discussion with their doctor about clinical trials? Submit your ideas or comment on ideas from others.
The catalog industry saved itself by creating a data co-op that dropped the cost of a “name” by 90%. If the pharma industry created a co-op of “patient names” by using a neutral, third-party vendor, it could solve its patient recruitment problem.
Patients and care providers should be aware of the mandated clinicaltrials.gov website which SHOULD list every Phase 1-2-3-4 clinical trial in a layperson format citing eligibility criteria, hospital location, and enrollment status.
Pharma/biotech companies make BIG money thanks to clinical trial volunteers. Have them step up and cover additional costs for side effects, paying to get volunteers to study sites, hiring people to help volunteers manage financial concerns etc.
OUR SON AT AGE 45 HAD A DELAYED DIAGNOSIS OF COLON CANCER AND WAITED 8 MONTHS FOR HELP FROM HIS FAMILY DR WHICH HE NEVER RECEIVED. WE NEED DOCTORS TO BE MORE AWARE OF EARLY DETECTION. HE IS NOW UNABLE TO HOLD DOWN A JOB BECAUSE OF DRASTIC MEASURES .
In healthcare we focus singularly And on the past.We need to bring in people from non healthcare disciplines for new strategies. We need to surround the cancer, eliminate its defenses then let the "killers" in the door to finish the job.
Organizations that run trials often won't give information on trials to patients. Community physicians are not interested in trials so won't call. We need a directory of trials by indications & locations for patient access.
We have problems with MAP, Commercial Plans, and coverage for clinical trials. Patient accrual is suffering. Payers are uneducated. We are challenged with the coverage analysis process and Medicare's reactions. United we could do something with it.
Translation of articles and creation reviews for cancer prevention.
Scientific facts about nutrition. Official research the relationship of nutrition and health.
Nobody can deny clinical trials are an incredible advancement in modern medicine, but what if patients can't get there? Public benefit flying is one of the world's best kept secrets and should be publicized in every hospital to help more in need.
Residents (following my Drs) do not seem to be given the opportunity/task to come up with a list of relevant clinical trials for patients. They have the latest knowledge & should be well suited to this task, so why not make this standard practice?
Please see references under Comments. The NCI Moonshot can create a system (like Froedtert and the VA) based on IBM's Watson. Patients can enter their medical profile (cancer type, gene mutations, etc.) and get relevant clinical trial suggestions.
Please see article shown in the Comments.
With a system like CrowdMed (or IdeaScale), patient profile (cancer type, stage, known mutations, past/present treatments) can be posted. The "Crowd" can make and vote on suggestions re: suitable CTs.
The requirement for fresh tissue, and thus an invasive procedure, as well as requirements for travel to a specific center are highly restrictive for many patients. Allowing for ANY cancer center and ctDNA biopsy could open many more studies to pts.