The current healthcare system is not designed to get patients to participate

Epatient and Patient research advocate, Jack Whelan, is active in clinical trials but admits that the pharma industry could be more accessible to patients.

Included in the pharma industry’s drive to become more patient centric is the desire to improve the patient experience and engage patients with their treatment.  According to Jack Whelan, who was diagnosed with a rare blood cancer six years ago, involvement in trials “is the most effective for the patient, as it helps identify and fix the disease sooner thus fewer courses of other treatment and risks of side effects.  Secondly, for providers, it costs less because patients get through treatment sooner, rather than taking the ‘trial and error’ approach.”

The only problem, according to Jack, is that most patients are unaware of the opportunities to participate. Their HCPs often don’t know which therapies are being trialed and often don’t advise their patients of the opportunity to be involved.  According to Jack, this is something we need to change: “studies show that many more people would explore this treatment option if they were asked,”

Patients are left to investigate using such popular sites as ClinicalTrials.gov (for the US) and www.ClinicalTrialsRegister.eu (for Europe). However, these sites are written by investigators who design the trial to help enable funding approval.

“So, it’s no surprise that these documents are not patient-centric. In hematology oncology, the language is very precise but for patients, the terminology is complex.   They’re not written with the assumption that patients will be reading about the study.  I think if pharma could get more involved supplying more patient information and education about their CTs that would be helpful,”

Clearly, a lot more needs to be done in the name of involving patients more fully in their treatment and engendering a generation of informed and actively healthy patients.

Jack Whelan will be speaking at The Patients Summit in London, 17-18 June 2014. For more information about him and other speakers, click here: www.eyeforpharma.com/patient