How and Why to Include the Patient Perspective
November 15, 2013
By Kristina Grifantini
Time and time again, both patients and healthcare partners have told NICHQ that the experience of working together in a quality improvement team is invaluable for both sides. By including patient and family representatives in the beginning of quality improvement work, teams are able to better target efficient, meaningful and sustainable changes in their systems. As a result, parent and patient participants see improved care and learn how to advocate for change.
Here are some tips and tools on how to engage with patient representatives and apply patient knowledge to your improvement efforts.
Publically Share Patient Stories to Increase Buy-In
Patient and family partner stories can be powerful narratives that help catalyze change. From a mom struggling with long wait times for her son’s autism treatment, to parents unclear about the next steps for their child’s hearing loss diagnosis, patient stories can help point to solvable problems in a practice. If patients and families are comfortable sharing, invite them to present their perspectives at physician luncheons or include their stories within a physician or leadership newsletter. These can be effective ways to increase staff buy-in for change. (See below for examples of patient essays and videos.)
Establish a Parent and Family Advisory Council (PFAC)
By formalizing patient and family feedback in a regularly meeting advisory group, which should also have administrators/healthcare providers in attendance, practices can better address family concerns. PFACs can help a practice become a true medical home by ensuring the practice stays patient-centered. See the PFAC Toolkit for resources on creating a PFAC.
Involve Patients and Families from the Beginning
It’s all too common for a practice to make a change and then ask patients for feedback. For more directed, transformative change, involve patient and family representatives in the very beginning of discussions. Getting the patient perspective in all stages of a change—from brainstorming, to testing, to fully implementing—will help make success more likely.
Ask Patients and Families to Share with their Networks
When considering a change, ask a family or patient representative to mention it to other patient contacts in their networks for more varied feedback. Your one family partner can act as a spokesperson for a wider family and patient perspective, which will help increase the chances of a change becoming a success.
Look for Professional “Parent Partners”
Professional parent partners are simply parents who have had experience in advocacy or quality improvement work. These parents are confident, speak their minds and are not afraid to ask questions. They can include members from nonprofit organizations such as Hands & Voices, a parent advocacy group for families with deaf/hard of hearing children. Start by seeing if patients or families in your practice have had experience in advocacy, communications or leadership roles.
- Powerful Partnerships: A Handbook for Families and Provider Working Together to Improve Care
- Creating a Patient and Family Advisory Council: A Toolkit for Pediatric Practices
- Cristin Lind’s Story: A Parent Partner for NICHQ's CHIPRA Massachusetts Medical Home Initiative finds a professional calling in advocacy for children with special needs
- Special Series: "Why I Participate" by NICHQ’s Parent Partners in Improving Breastfeeding Rates
- “Why I Participate” in NICHQ’s improving hearing screening project: Tonya Bowman and Wendy Hewitt stories, Cindy Roller (video), Helen Cotton-Leiser (video)
- “Why I Participate” in NICHQ’s Medical Home project: Olga Cappas story
- “Why I Participate” in NICHQ’s Autism project: He’s Just a Boy (video), Working with Parents to Improve Care for Children with Autism (video)
If you’d like assistance on how your practice or organization can better partner with families and patients to target change, please contact us at firstname.lastname@example.org.