1:30 - 1:50 pmSunday, September 7
LK 102
My experience in becoming a patient expert on a clinical research team
LK 102
My experience in becoming a patient expert on a clinical research team
BA, ePatient Scholar
Post-Op Problems: I always thought about my healthcare in a straightforward way: see the doctor, follow directions, get better; this plan, however, does not always work. Approximately two years ago, I... Read more

Description

Post-Op Problems: I always thought about my healthcare in a straightforward way: see the doctor, follow directions, get better; this plan, however, does not always work. Approximately two years ago, I underwent elective surgery. After being discharged from the hospital I felt my wound was not healing properly. Unable to get in contact with my surgical provider, it was an anxiety-filled time. Later, it was my family doctor who diagnosed my surgical site infection (SSI). I realize now I could have made more of an effort to get educated about post-surgery healing, tracked my wound, and overall been more proactive, but it simply never occurred to me. 

Engaged in Research: The mPOWEr project (mobile Post-Operative Wound Evaluator), a post-discharge wound surveillance mobile health (mHealth) app, encourages patients to engage in their wound management, allows surgical providers to monitor their patients post-discharge, and provides a reliable method of patient-provider communication. Recognizing the importance of patient input on the viability of new technology, the mPOWEr team invited me to join them as a patient advisor. While happy to get involved,  I did not immediately recognize what I could contribute to a team of such highly educated, experienced people. My value is my patient experience! My mere presence focuses the team with a more patient-centered approach and helps to design a tool that patients will actually use. As an advisor from the very start of the project, I provide the patient voice and ensure that the issues most important to patients are continually represented. Getting involved as a patient advisor also changed the way I think about being engaged in my own healthcare and has created so many other opportunities for me, including becoming a Stanford MedicineX ePatient Scholar.

Lessons Learned: As patient advisor on mPOWEr, I learned that many surgical patients suffer the same thing I did. SSIs are the most common healthcare-associated infection, most often occurring post-discharge. Patients intimately feel the impact of their medical conditions and treatments. We can help address gaps in the healthcare system and inform the most useful interventions. Yet, we are a vastly underutilized resource. I truly believe that patients should not only be on the receiving end of healthcare, but also be contributors to medical research, policy-making, and practice. To me, there are two main parts to being an ePatient: 1) use technology to manage and stay educated about my own medical condition; and 2) use my experience to engage and encourage others to do the same. When I had my SSI, I failed at part one, but I have been able to use that to accomplish part two. On the mPOWEr team, my own patient experience is my expertise and I am using it to help create an mHealth patient-centered solution. I am excited that this app has the potential to empower patients in their wound self-management and promote better patient-provider engagement during the post-discharge healing period.

In 2011, Sarah Han had a post-discharge surgical site infection. This painful experience made her realize that there are gaps in the healthcare system and patients have meaningful information to address them. So, she became a patient advisor on a research project that was still in its beginning stages. Using her patient experience as expertise, Sarah brings a patient-centered approach to the project's methods and ensures that things most important to the patient are always represented. Sarah comes to Medicine X humbled and excited to engage with a community that also believes in the power of the patient experience in medical research.

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