A Patient Perspective on Patient Engagement

Presenting the patient perspective at next week’s eyeforpharma Barcelona event (March 24–26) will be the research advocate, lecturer, author, cancer warrior and survivor, Jack Whelan.

Diagnosed six years ago with a rare, incurable blood cancer - which research then showed had an overall five-year outlook for symptomatic patients requiring treatment - Jack travels the world helping to bridge the communications gap between life sciences, medical professionals and patients, speaking on topics such as the e-patient, clinical trials, personalized medicine, patient and research advocacy and healthcare disparities. He is active with LLS, AACR, ASCO, DIA and BIO’s advocacy groups and is co-chair of Dana Farber Cancer Institute’s Patient Family Advocacy Counsel. 

Pharm Exec caught up with Jack ahead of his presentation to hear his message about what pharma could be doing to improve its communications with patients, and where patients should be looking to optimize their treatment options.

What is the message you are pushing out to pharma and to patients?

Sooner or later the topic of cancer is going to come up in your life, whether it’s you or a member of your family.  I’m trying to convey a key message - when that happens, take a look what’s going on in clinical trials.  Because 95% of patients get what’s called standard of care, involving conventional chemotherapy. In industry development now we’re getting much better at targeting the specific malignancy, or malignant gene. But most of these new, targeted therapies are not yet in distribution, many are still in clinical trials.   With what we’re learning about genetics and genomics, these novel targeted therapies might be safer and more effective than the more popular historical therapeutics and outcomes.

Because of the many myths and misconceptions about clinical trials and because most primary care physicians and general practitioners don’t know much about clinical trials, patients are not even asked to consider what’s available. So, you need to be proactive about your own care and look at what’s happening in research in clinical trials.

Would you say pharma companies are improving at patient engagement?
They’re making meaningful inroads, but when it comes to actual treatment, there really is very little direct communication between the pharmaceutical and biotech companies and patients. I think there are two key obstacles to be overcome.

The first is the distribution channel by which pharma/biotech companies delivers its products to patients; they go to a third party, a healthcare provider, so there’s no direct, natural contact; these companies are not aware of a patient’s individual circumstances.

Second, the regulatory environment doesn’t really encourage direct patient engagement.  In fact, some of the healthcare privacy laws such as the Health Insurance Portability and Accountability Act (HIPAA) actually discourage the free flow of information, especially epidemiological information.

If you look at the clinical trial process, there’s no immediate, urgent feedback of patient data. Outcomes if reported at all, typically wait until the end of the trial, or some key milestone during the trial.   With targeted therapies there’s no need to wait for the long-term result. We can measure response, we can see when a patient is refractory to a drug or when relapsing during therapy.  We can often anticipate certain adverse effects by monitoring certain biomarkers. I don’t think we’re doing a good job getting any of these key measurements and biomarkers because we’re not collecting real-time patient data.  

Have you seen a marked increase in patient power: tech-savvy patients taking more control of their treatments?
There’s a certain subgroup of patients within the larger patient population who are keen to know about their disease and engage with the pharma/biotech industry. But I think there is a far greater number of patients who are passive about their treatment because of the historical nature of healthcare. They take what I call “the car wash approach”.  In a car wash, you just sit there passively while going through; you just “receive” it.

I see plenty of evidence that pharma wants to step up patient engagement.  One of the more popular industry buzzwords is Patient Centricity.   There’s some good news on the horizon as electronic Patient Reported Outcome (ePRO) information systems come on line; they facilitate better patient data collection and reporting typically using mobile device technology.   When patients start to track their data and biomarkers, I think it will raise the level of communication between patients, physicians and the overall life sciences industry.

But we’re still not there. Recent healthcare policies and government funding in the US have tried to come up with standards that allow for the free flow of information.  But when I look at the next generation of EMR/EHR systems even those in development, I think they’re fairly backward compared to other Information Technology (IT) systems.

It’s amazing that virtually all the ‘patient information’ about my automobile is available online to any dealer or service location anywhere in the world. Using my vehicle ID number they can see when my car was purchased, whether my car has received preventive or remedial maintenance, including details that are important to my car’s doctor, the mechanic.  So if that technology is available for automobiles, why is it not available for humans?

www.jack-whelan.com/