Finding Support for Patients in Unexpected Places
The JACR shows leadership in patient-centered care by including patient advocates in its hackathon and on its Editorial Board.
I received my first copy of the JACR in the mail: the July 2016 issue (volume 13, number 7 to be exact). Why do I remember the exact volume and issue? It's not because I'm a retired nerdy engineer (I am). Rather, this is one of the first (if not the first) issue of a peer-reviewed medical journal that lists a patient advocate as an associate editor on the masthead. Ever. And not just one, but two: my colleague Andy DeLaO and me.
I came to my second career as a patient advocate and public health researcher after the loss of my husband to lung cancer. During my caregiving journey, I realized somebody (in fact, lots of somebodies) needed to do more to help people with this devastating disease, so I became an advocate.
At the beginning, I felt self-conscious and unqualified due to my lack of medical credentials. I even hesitated to call myself a lung cancer advocate on my business cards. I cancelled my first order and reordered the cards, listing "lung cancer awareness" as my profession. I soon realized my enthusiasm, strong engineering-acquired analytical skills, and willingness to volunteer provided many opportunities for advocacy projects. However, not all medical professionals, health care organizations, and medical societies welcomed patient and patient advocate involvement in health care related research, quality measures and initiatives, technical conferences, or even patient experience committees. Some excluded us totally. Others provided separate "special tracks," forcing us into silos, creating the appearance of inclusivity while minimizing access to real health care and conference activities.
Fast forward three years to May 14, 2016. I had just graduated with a master's in public health and was helping the JACR host a hackathon at the start of the ACR 2016 Annual Meeting. Ruth Carlos, MD, FACR, JACR deputy editor, approached me (and Andy DeLaO) in the summer of 2015 to be on the planning committee to represent the patient voice. A scholarly journal was planning a hackathon to address the patient and caregiver need to access peer-reviewed medical journal articles. How inspiring!
The hackathon was a great success. The teams identified innovative approaches to providing journal article access. JACR's publisher, Elsevier, offered to help find sponsors to fund development of the ideas. The whole hackathon experience was a model for acceptance, inclusion, and respect for the patient voice and the patient advocates. This was proactive patient-centered care at its best.
I enjoyed seeing even more about patient-centered care during the rest of my time at ACR 2016. The opening address by President David Kushner laid out a vision for a transition to patient-centered care and an impressive list of accomplishments already achieved. It was surprising to me (in the best of ways) that radiologists, often stereotyped as isolated in a back room staring at computer screens, would be the ones leading the way to patient-centered care.
The Morton Lecture speaker was Andy DeLaO. His talk focused on how radiologists could come out of their dark reading rooms and into the metaphorical light to engage with patients.
I was already impressed by the vision and leadership of the ACR and JACR, but my involvement didn't stop here. I was invited to attend the Patient- and Family-Centered Care (PFCC) Commission meeting and to join one of its committees. Although only the group's first official in-person meeting, much work had already been done virtually by teams comprised of ACR members, patients, and patient advocates. This reinforced my belief that ACR is the professional medical society most committed to patient engagement and inclusion.
After lunch, Bruce J. Hillman, MD, FACR, editor-in-chief of the JACR, asked if I would be interested in being an associate editor to bring the patient perspective to the journal. I accepted of course and thanked Bruce for the opportunity to help bring the patient voice to the radiology community.
Since then, everyone in the ACR community has been supportive and encouraging to Andy and me as associate editors. The JACR staff are working with us to develop this new role for patient advocates. In this capacity, I will be reviewing manuscripts that are of particular interest to patients and caregivers, as well as writing a blog post every other month. I am incredibly excited and honored to be part of the JACR family. Thank you all for the warm welcome and the support.