Jack Whelan: Getting Patients Involved in Their Care

Research advocate Jack Whelan discusses patient involvement in their own care: how to discern which sources are the most reliable, the importance of better incorporating patient-reported outcomes into healthcare, and how patients should become more educated about their care.

Transcript (modified)

What is the best way patients can use online resources while filtering out misinformation?

Wow, it’s the “Wild West” on the internet: there’s so much information, and much of it is not vetted information, so we have to be careful about what we pick up. But I think that a rational and reasonable person can filter through what’s available, and discern what is good information. I think any of the major institutions that publish vetted information are probably the best source —organizations like ASCO and AACR and your own, are really good sources of data. So I would rely on well-known organizations that have their data independently vetted.

How would you like to see patient-reported outcomes be incorporated into healthcare?

Well, there’s a fundamental problem in patient-reported outcomes right now. Most of the pro-data, or even epro-data, is processed in batch mode, it’s not processed real time. So, for example, many of the therapeutics we have now caused an immediate response, and yet we don’t measure that response for 2, 3, 4 months, and when we capture the data, it’s processed in batch mode and then sent on for further evaluation. We fail to anticipate emerging adverse effects, or even serious adverse effects; we need to make it real time, we need to use the ubiquitous internet, and use mobile devices to collect and report this data.

What are the benefits to a better educated patient and do you think providers are seeing and understanding this?

I think a better educated patient means a partnership with your physician or your oncologist. The more you know about the disease, the more likely you’ll be actively involved. If, for example, you understand the key biomarkers that your doctor is looking at, you’ll be actively involved in your own care. You’ll be able to measure response, whether you’re relapsing, whether you’re refractory to a drug, and I think these things are important in being educated and being a patient.