ASCP Patient Champions Resource Library: An Educated Patient is an Empowered Patient

For patients, reading a medical laboratory report can be a huge challenge; they are often complex and without context or additional interpretation in “plain English,” patients can be left with many questions and nowhere to go. UCLA pathology resident Cullen Lilley, MD, MS, MA, MB(ASCP), remembers a recent conversation he had with a patient experiencing this issue. “I know how impactful these reports can be,” he says. “One day, a patient can be getting a routine screening, and the next, they could be grappling with a diagnosis of cancer.”

With the ASCP Patient Champions Resource Library, patients have somewhere to start. The Patient Champions Resource Library was launched a few years ago and has grown significantly over the past year. Most resources are related to laboratory tests and address 30 different medical diagnoses, from breast cancer to cervical cancer, aplastic anemia, cystic fibrosis, and diabetes. The educational materials are listed online, and many are also available in Spanish.

The resources explain all the different testing that might occur throughout the entire diagnosis and treatment of a condition. For example, the educational materials on breast cancer address all the potential laboratory tests a patient might undergo during the screening, diagnosis, treatment, and management of the disease.

“The goal of the Patient Champions program is to educate and empower patients so they can be well informed,” says Sophia Lewin Adams, ASCP project coordinator of Patient Champions. “An educated patient is an empowered patient. After we began sharing the stories of our Patient Champions, we began to create educational flyers on the various health conditions they experienced.”

The educational material for each of the flyers is reviewed by a panel of experts for that particular disease. The flyers can be downloaded and shared. About 20 different flyers have now been translated into Spanish. Dr. Lilley, who serves on the ASCP Patient Champions Steering Committee, frequently forwards links to the Resource Library to friends and family who have questions about their pathology reports.

“The resources are high quality, easy to understand, and beautifully constructed,” Dr. Lilley says.

These days, patients can find out so much about disease by going to the internet on their own. Plus, with the 21st Century Cures Act, a federal law enacted in 2016, patients can obtain their test results online, even before they speak with their physician about them. Patients want to know their results and will perform their own research, without knowing if it is entirely accurate. The educational materials in the Patient Champions Resource Library are reviewed for accuracy by a panel of ASCP members who are experts on the various topics. The change in the reporting of pathology results brought about by the Cures Act has piqued Dr. Lilley’s interest.

“During my advanced bioethics studies, I spent a great deal of time researching and grappling with this concept,” says Dr. Lilley. “I think there has always been this idea that patients wouldn’t want to see their pathology report without some explanation by their doctor beforehand, but that idea has not panned out in large empirical studies.

“Having a resource like the ASCP Patient Champions Resource Library, patients can have a reliable, easily navigable, and digestible resource at their fingertips to answer those tough questions,” he adds. “Of course, as pathology reports become more complex—especially with molecular and biomarker details—these resources will become more and more important. At the end of the day, patients will do their own research, and we have a responsibility to our patients, as physicians and laboratory professionals, to put information out there to help our patients better understand their unique clinical situation and how to interpret the results from their own tissue samples.”

Patient Champion Anna Dahlgren, MLS(ASCP)^CM, of Duluth, MN, says she would have appreciated having educational materials available to learn about colon cancer when she was first diagnosed several years ago. She was shocked when she received her diagnosis of stage 1 colon cancer because she was only 33, which is considered relatively young to have the disease.

“Even though I was a laboratory professional at the time, I did not know about colon cancer or the treatment options that were available,” she says. “So, it would have been helpful to have educational resources available to review so that I could be better informed when I spoke to my doctor about why he wanted to pursue certain approaches to treatment.”

Today, Ms. Dahlgren continues to have routine colonoscopies to monitor her health, even though her risk of recurrence is low. She also became an ASCP Patient Champion last year as she wanted to help raise awareness about the critical role that the medical laboratory plays in diagnostic care.

Much of the work being done by the ASCP Patient Champions program helps facilitate conversations between physicians and patients. “This line of communication is incredibly important,” says Dr. Lilley. “There are numerous studies looking into novel means of bridging the epistemic gap between the pathologist and the patient. Not only are these interactions helpful in educating patients but they will undoubtedly improve patient satisfaction and outcomes, and they can be incredibly therapeutic for patients and pathologists.

“The work ASCP Patient Champions has done in this area is not only extremely innovative, but it is also needed,” Dr. Lilley adds. “Without a centralized, concerted effort made by a major pathology organization on how to effectively bridge this gap, there will be groups working independently, re-inventing the wheel over and over all while patients continue to be without the resources they need.”