Authors: Vincent Del Gaizo is the father of a systemic onset juvenile idiopathic arthritis patient diagnosed in 2001 at 15 months of age. For the past 12 years, he has been actively involved in the field of pediatric rheumatology research, directly contributing the patient voice and perspective to research initiatives in these rare diseases. He was a founding member and past Chair of Friends of CARRA, a nonprofit organization established to promote needed research and awareness of pediatric rheumatic conditions. Vincent is Co-PI of PARTNERS, a PCORnet patient powered research network in pediatric rheumatic diseases, and is currently the Co-Chair of PCORI’s Rare Disease Advisory Panel.
Sarah Mabus, MLA is the Project Manager for the Center for Advancing Pediatric Excellence (CAPE) in the Pediatric Specialties Care Division at Carolinas HealthCare System’s (CHS) Levine Children’s Hospital. She is also involved in numerous health literacy initiatives, including membership on the CHS Patient/Family Health Education Governance Council’s Infrastructure Subcommittee and Evaluation Subcommittee, and participation on the Outreach and Communications Subcommittee the PARTNERS.
Laura K. Noonan, MD is a founding organizer and current Director of CAPE in Levine Children’s Hospital at Carolinas Medical Center. She has extensive experience and leadership roles in both Quality Improvement (QI) and health literacy. She is a QI consultant for the PARTNERS Patient Powered Research Network and a QI consultant and Parent Advisor for PR-COIN (Pediatric Rheumatology Care and Outcomes Improvement Network).
Worried. Scared. Confused.
These are some of the feelings people have after learning they or a loved one have a disease with no cure. “What do I do now?” The lack of answers deepens these feelings. Patients and families must choose a medicine they know nothing about to treat an illness they didn’t know existed. When they find information about the disease, it is often hard to understand. Patients and their families might feel left out of the research meant for them.
Thanks in large part to PCORnet, the National Patient-Centered Clinical Research Network funded by the Patient-Centered Outcomes Research Institute (PCORI), this is changing. PCORnet brings patients, caregivers, researchers and doctors together to partner on research so that everyone is included.
In pediatric rheumatology, patients, families, doctors, and advocacy groups teamed up to form PARTNERS (Patients, Advocates and Rheumatology Teams Network for Research and Service). PARTNERS is a Patient-Powered Research Network (PPRN) within PCORnet and its mission is to do the kind of research that will help answer the question “what do I do now?” – so families can be a little less worried, scared, and confused.
One way to include patients and caregivers is with the use of health literacy tools. Health literacy means the ability to work through the health care system, such as finding your way around the building, knowing what test results mean, knowing how to take your medicines, or knowing what your bill or insurance rules mean.
That’s why PARTNERS wrote a health literacy policy. Using this, all members can connect with each other and feel more at ease. Within PARTNERS, everyone from teenagers to doctors has an equal voice on every topic. Bringing together such a diverse group of people is no easy task. Just as the United Nations uses a translator to connect people from different countries, this health literacy policy is PARTNERS’ translator.
As parent member Marcela Riano says, “When I heard the word research before, I thought we were only talking about new medicines and finding a cure. I now see that health care providers also need to know how to communicate better with patients and find ways to answer our questions and fears. I felt intimidated at first, but now I know, I have a view from my own experience and cultural background that has value.”
One of the project leaders for PARTNERS has been involved in health literacy work across the U.S. She is a doctor and the parent of a child with Juvenile Idiopathic Arthritis. Her experience, passion, and knowledge helped inspire PARTNERS to write the policy in 2016. Many people—including parents, doctors and advocates – wrote pieces of the policy, adding ideas and drawing from many sources. After several drafts, all PARTNERS members agreed to the current policy.
Based on advice from national health literacy experts, the policy includes points on target grade level, word choice, structure, tone, numbers, layout, and graphics. Below are some highlights from the policy:
- All content must be shared in a way that families can understand, and all contact must encourage patients and families to share their ideas openly.
- The policy guides all PARTNERS teams and applies to any form of communication including pamphlets, research results, consent forms, invitations, news, etc. (Even this blog post!)
We aim for:
- A 6th grade reading level, using tools such as Health Literacy Advisor or the Flesch-Kincaid score found under “Readability Statistics” in Microsoft Word
- Clear, brief messages with only “need to know” points, that offer ways to learn more, such as non-written options (hotlines, support groups)
- “Living room language,” choosing short common words, and avoiding jargon
- Simple and direct sentences, keeping each sentence to 10 – 15 words, using bulleted lists, and avoiding padding sentences with extra words (“very,” “actually”)
- A positive, active tone spoken directly to the reader (“you” and “your”)
- Simplified numbers when talking about amount, time, and risk and avoiding very big numbers (over 100) or very small (less than 1), using absolute terms (“6 out of 12”) instead of relative (“twice as many”) and using pictures
- Plain language definitions for medical terms: “Rheumatologic disease (pain in your joints)”
- Clean pages with fonts, spacing, and design that help readers process better. We start and end with key points, group similar items, keep white space, and use at least 12-point type.
Health Literacy Tools
If you want to learn more about health literacy, go to the Agency for Healthcare Research and Quality’s (AHRQ’s) Health Literacy Toolkit. It has free health literacy tools for spoken contact, written contact, self-care, and support systems, and tips to get started. The CDC’s “Plain Language Thesaurus” is also an excellent resource to help replace medical words with more health literate choices.
This is harder than it sounds. We don’t always succeed, but we will continue to try. We see it as one of the best ways to improve the health care experience for everyone.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.