Health Literacy: A Critical First Step in a Collective Effort to Improve the Care of Individuals with CKD/ESRD

Proficiency in health literacy is a critical ingredient in the outcomes of both the prevention and the treatment of kidney disease. Unfortunately, according to a US Department of Education report, only 12 percent of Americans are proficient in health literacy (1). Given that health literacy is all about communication and understanding among patients, families, and health care professionals, the fact that health literacy skills are also suboptimal among nephrologists, nephrology nurses, technicians, and other health care staff can only mean that the results of our treatment efforts are far less than they could be. This is simply unacceptable.

With the conviction that in this era of health care reform, the health literacy problem requires urgent attention focused on improving the quality of care we provide, the Rogosin Institute hosted a roundtable entitled Health Literacy and Renal Disease: Promoting Prevention and Achieving Improved Outcomes in Chronic Kidney Disease (CKD) and ESRD on March 9, 2015, at its Jack J. Dreyfus Center for Health Action and Policy in New York City. The goal of the roundtable was to generate concrete ideas and proposals and to launch pilot programs to improve health literacy among both patients and professionals to ensure better care and outcomes for CKD and ESRD patients in New York City and elsewhere.

The participants included individuals with kidney disease and a diverse team of health literacy experts from across the United States with backgrounds in medicine, nursing, nutrition, social work, health information technology, and public policy. Cindy Brach, senior health policy researcher at the Agency for Healthcare Research and Quality, provided the keynote for this roundtable meeting.

In preparation for the roundtable, members of the Rogosin staff conducted interviews with 41 patients at seven different facilities (six dialysis facilities and one CKD clinic) to ensure that patients’ voices were incorporated into this discussion. The patients were asked about their understanding of their diagnosis, health care experiences, understanding of health-related communications of various types, and what tools they wish they had to help them understand their treatment and be better partners in their care. The participants ranged in age from 24 to 88, were split fairly evenly between men and women (54 percent men, 46 percent women), and had diverse racial and ethnic backgrounds. The ESRD interviewees had been receiving dialysis for as little as 2 months and as long as 15 years.

Key themes that emerged from the interviews included the need for more support from families, peers, care- givers, and the care team for the patients themselves and for their care partners; the importance of tailoring education to the specific needs of the individual patient; and the need for education materials of all types in different languages. The participants shared that simply receiving information about their health did not necessarily lead to behavior changes. When asked about how they would like to learn about their health care, 84 percent of the Rogosin patients interviewed stated that they considered videos to be valuable educational tools and wished that these were available to them.

With these data and the participants’ experience and expertise available in the room, discussion at the roundtable was spirited. The driving force of the discussion was the recognition of suboptimal health literacy skills among both kidney patients and the staff caring for them, and the urgent need to achieve better health and quality of life outcomes for patients with both CKD and ESRD. Throughout the discussion, common themes included the need to recognize the totality of the complex, difficult, and varied challenges facing CKD and ESRD patients; to promote a sense of hope among patients and their families; to address mental and emotional health issues; and to actively engage patients and staff in true care partnerships.

The group defined the following specific problems as needing high-priority action:

  • Fragmentation of the care of CKD and ESRD patients, most of whom have complex multiple comorbidities
  • Lack of patient support systems
  • Limited staff skills in health literacy techniques and tools
  • Suboptimal appreciation of the importance of health literacy among patients and staff
  • Limited distribution of already available educational and training information and tools to improve health literacy levels
  • To address these issues, actionable project ideas were developed by the roundtable participants for pilot implementation at Rogosin, with the ultimate goal of collaborative replication at other sites. The project action plans currently in various stages of implementation at Rogosin include the following:
  • Care coordination: Rogosin is working on multiple initiatives to increase collaboration and coordination of care of CKD and ESRD patients. For example, a renal management clinic was recently launched, whereby an interdisciplinary team works with stage 4 and 5 CKD patients to help educate them about their condition and their treatment options, and to prepare them for dialysis or transplantation if their kidney function continues to deteriorate.
  • Patient support: Patient participants shared that they often learned best from other patients and felt that fostering peer support was critical. While building support group opportunities and peer mentorship programs more generally at each of the Rogosin CKD facilities, a series of peer-to-peer learning videos will be developed and made available through the Rogosin iTunes University site. The videos will also be available on iPads for patients to view during their dialysis treatments.
  • Staff training: All current and future staff members, from front-desk administrators to technicians to physicians, will be trained in the importance of health literacy skills and the basic techniques required, including the “teach-back” method (see box). Health Literacy Champions at each dialysis unit will be appointed from within the staff to move this initiative forward and sustain it.
  • Dissemination of health literacy information: Participants at the roundtable are currently working on articles related to health literacy and renal disease intended to be published in both academic journals and practice-based publications to increase awareness among professionals about the importance of health literacy. The articles in this issue of Kidney News mark the launch of this effort. In addition, Rogosin staff, with the assistance of the other roundtable participants, will develop a catalog of available health literacy materials (both general and kidney-specific) for broad dissemination for the benefit of both patients and staff.

Recognizing that the improvement of health literacy skills must involve an ongoing commitment and program, Rogosin health literacy roundtable participants will reconvene in the next 6 to 12 months to report pilot project progress and to discuss collaborative plans for replication in other sites. We welcome all who are interested in the improvement of health literacy levels to contact us and join with the roundtable participants to bring nephrology health professionals to the forefront of what we hope will be a national effort to improve health outcomes and quality of life for all kidney patients and their families. Please join this effort. We can achieve much more together.





National Center for Education Statistics, U.S. Department of Education, 2010.


Schillinger D, et al. Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med 2003; 163:83–90.