Even though a concrete diagnosis provides an answer to the question of what is wrong, it oftentimes leads to a host of new
questions. The mission of Cancer101, a nonprofit organization based in New York City, is to empower, inform and engage cancer
patients and their caregivers by helping them partner with healthcare providers to make informed, collaborative decisions.
Sarah Krug, executive director at Cancer101, says the organization's impact lies in its ability to educate patients based
on individual needs. As cancer has splintered into a number of subtypes, many with specific treatments tailored to optimize
outcomes for patients with specific genetic mutations, information specificity has lagged in terms of personalization. "If
a patient is female and 35 years old, she might need information on fertility preservation," says Krug. Questions often arise
when a physician isn't around to provide an answer, so Cancer101 has developed a toolkit that's personalized at the point
of care, for individual patients.
Instead of sending toolkits directly to patients, Cancer101 partners with clinicians, which helps facilitate a partnership
with patients. Krug calls the process a "prescription to learn;" Cancer101 incentivizes adoption by offering CME credits for
clinicians learning how to use the toolkits, which are intended to be used over a 10-year timeframe. "There's a lot that goes
on between visits, so it's important for patients to document their day-to-day life – an expertise in it's own right – so
that when they come in for an appointment, they get medical expertise based on their own patient expertise," says Krug.
Cancer101 is currently working on an electronic version of the toolkits, but interestingly, many patients in the recent past
have expressed a preference for the tangibility of a binder, and the ability to add new inserts as they become available,
and to keep track of the endless paperwork generated in hospitals. The information contained in the toolkits, which have been
deemed the "Cadillac of patient education," according to Krug, is aggregated from a variety of sources. "We work with different
organizations and get permission to reprint their content, so if the National Cancer Institute has great information about
lung cancer, for example, we'll use it – we don't have to create education from scratch," says Krug. "We only build new education
in areas of unmet need." Cancer101 regularly conducts surveys with clinicians to keep toolkits up-to-date, and prioritizes
health literacy, to ensure that toolkit materials are best suited for patients. The organization reaches 100,000 cancer patients
Krug, who also serves as past president of the Society for Participatory Medicine, and as a board member at the National Organization
of Rare Diseases (NORD), is currently working on a code of ethics to guide relationships between patient advocacy organizations
and pharma companies.
Agents of change
The patient advocacy movement, taken as a whole, is as multifaceted as patients themselves. As new treatments, new models
for healthcare delivery, new regulatory pathways, and new patients enter the system, advocacy efforts will continuously adapt
and expand to support new patient needs, and to fill the gaps in the established order. No commodity is more valuable than
human health, and patient advocates will only get better at protecting and defending it.
Ben Comer is senior editor of Pharm Exec. He can be reached at firstname.lastname@example.org