By Cheryl Crow, patient advocate and occupational therapist
My name is Cheryl Crow, and I am an occupational therapist (OT) who has lived with rheumatoid arthritis (RA) for 18 years.
In early November, I was honored to attend the annual American College of Rheumatology’s virtual conference as both a speaker and an attendee. Along with fellow patient and health care provider Courtney Wells, PhD, a social worker and instructor, and fellow RA patient, Mariah Leach. creator of Mamas Facing Forward, I presented during the session, “Reproductive Health: Meet Women’s Needs.”
During our session, we shared research on how many women with rheumatic diseases lack sufficient education and support during their reproductive and parenting experiences, and we proposed some potential solutions. My presentation focused on how to “Address Postpartum Needs of Women with Rheumatic Diseases: Practical Tips From an OT.”
“It was really powerful to share my best tips and tricks from my training and my personal experiences — I even got to share cute baby pictures of my son, Charlie, to illustrate my points!”
The best part was seeing the responses in the “chat” box during the session, as well as on social media afterward. For example, Megan Clowse, MD, MPH, associate professor at Duke University wrote: “This has been a terrific session and the highlight of the meeting for me. Thank you so much for doing this and for all of your work.” Dr. Berquist wrote: “I’ve never thought about referring my arthritis patients to OT during the post-partum period. It makes sense.” Dr. Edens shared: “Thank you for highlighting the importance of involving patients in their care and addressing the many aspects of reproductive health in rheumatic diseases.”
My session was not the only one that highlighted the patient perspective. I was blown away by another session, “Patient Perspectives,” particularly when patient Elisabeth Abeson shared her “Integrative Approach to Managing Rheumatoid Arthritis (RA): Healing the Body, Mind & Spirit.” Abeson described how her journey to find the best healing tools for her rheumatoid arthritis has taken her around the world! She also shared the importance of art therapy and meaningful social connections at patient support groups.
Additionally, I found one of the keynote lectures, “Empowering Patients to Make an Impact on the Future of Healthcare,” by Jen Horonjeff, PhD, very powerful. She is a juvenile idiopathic arthritis (JIA) patient who has formed Savvy Co-Op, which empowers people to use their patient experiences to improve health innovations. She passionately articulated the importance of truly listening to patients to help them improve larger systems — not just the quality of their own care.
Another highlight was a study group session: “Developing Disease-Specific Patient Support & Education Programs,” by Hospital for Specialty Surgery social workers Adena Batterman, LCSW, MSW; Roberta Horton, LCSW, ACSW; Jillian Rose, PhD, LCSW, MPH; and Joan Westreich, LCSW, plus a complementary session, ”Patient Education: Team Up to Optimize Outcomes,” by Jillian Rose, PhD, MPH, LMSW; Mwidimi Ndosi, PhD, MSc, BSc (Hons), PgCert, RN; and Sandra Mintz, MSN, RN-BC. Both sessions highlighted the importance of deep and meaningful patient-provider partnerships in all aspects of rheumatology care.
Lastly, I was very moved and excited to hear a session about how to “Help Patients Navigate Online Support & Social Media,” particularly the sub-talk, “Your Digital Patients: Patient-Centered Social Media,” by Jilaine Berquist, MD, of SSM Dean Medical Group. Dr. Berquist had a very balanced view about the fact that disease-specific social media communities are an important source of support for many patients, but she also provided advice for how to avoid common downsides of social media, including lack of quality control for information shared.
It was an honor to attend this virtual conference and help elevate the voice of both patients with rheumatic diseases and the role that occupational therapy can play in helping patients manage complex diseases.