By: Lauren Crigler and Anya Levy Guyer
A Ugandan expert patient states, “I accepted my HIV+ status and wanted to help others cope with HIV and come out of stigma. I also wanted to help myself to prevent stress at home, wanted my children to know that being HIV+ is not the end of the world and learn how to live with HIV. I also wanted to help caretakers and the community with taking care of the sick.” (2)
The Ugandan quoted above is one of an increasingly large group of “expert patients,” a sub-group of lay/community health workers. Expert patients are people living with a chronic disease who are successfully managing their disease, and who provide support and services to other clients in facilities and at the community level.
The term was first formally used in the UK to refer to people involved in supporting self-management among people with asthma, arthritis, mental illness, multiple sclerosis, diabetes and other non-communicable diseases. Nowadays, in many countries in the Global South, and particularly in Africa, expert patients are increasingly involved in HIV and AIDS prevention, treatment and care efforts.
Since the advent of the AIDS epidemic, people living with HIV and AIDS (PLHA) have been leaders in promoting prevention, research, and treatment services and policies. A 2006 review found that PLHA were mostly involved in health promotion and prevention and noted, “We have not come across any examples of direct PLHA involvement in the provision of ART.” (3)
Similarly, 2007 WHO recommendations focused on patient support and involvement in training health workers as the roles for expert patients. (4) There is some expansion of this in the 2008 WHO Task Shifting Global Recommendations and Guidelines; these focus on “expert patients” involvement in “the areas of health promotion and prevention, home-based care, adherence support and treatment literacy activities.” (5)
However, in 2010 we conducted a USAID-supported study, with funding from PEPFAR, of expert patients in six ART clinics in Uganda (2); we found that expert patients are increasingly functioning more like community/lay health workers.
In addition to health education and home-based care, the tasks being carried out by expert patients were directly contributing to medical care provided to PLHAs, including filing and data maintenance, clinic flow management and client registration and assessment during triage. One expert patient told us: “Recording client information helps the monitoring and evaluation department. More clients are seen every day, and those who used to fear have started treatment. More clients are seen and health workers are no longer rude. Waiting time has been reduced.”
On the whole, expert patients, community members and the professional health workers were pleased with and grateful for the work of the expert patients, which helped clinical services run more smoothly. The main recommendation we made at the end of the report on the study was that Uganda should “Develop a national policy framework that clearly defines the expert patient role and tasks in the facility and community,” as each facility and NGO was managing them differently.
We were excited to see the WHO’s recent recommendations on task-shifting in maternal and newborn health care (6) and the prominent roles outlined for lay health workers. In addition to the evidence and guidance included in the recommendations, the format for outlining appropriate roles for different categories of health workers seems very useful when considering the roles of expert patients and other community health workers: they present their findings according to very specific key questions. For each question they provide a recommendation, justification and conditions. The recommendation could be one of four options: 1) Recommend, 2) Recommend with targeted monitoring and evaluation, 3) Recommend only in the context of rigorous research, 4) Recommend against the practice.
For example, Guidance Question 2.1 asks “Should LAY HEALTH WORKERS administer oxytocin to prevent postpartum hemorrhage, using a standard syringe?; and the recommendation is option 3: “We suggest considering this option only in the context of rigorous research.”(6)
Later in the month we will turn our attention to these recommendations in more detail, but for now, we pose the following set of questions.
If we were developing guidelines for task-shifting to expert patients:
- What questions would you want addressed? A few that we have thought of are:
- Could expert patients triage ART clients who come for regular medication pick-ups but have no symptoms?
- Could expert patients initiate new clients on ART? What else would you like to ask?
- What guiding recommendations would you make based on your experiences?
- What evidence exists to support your recommendations? What research questions need to be studied?
References:
(1)Callaghan M, Ford N, Schneider H. 2010. “A systematic review of task-shifting for HIV treatment and care in Africa.” Human Resources for Health http://www.human-resources-health.com/content/8/1/8″
(2)Crigler L, Wendo D, Guyer A, Nabwire J. 2011. “Task Shifting in HIV/AIDS Service Delivery: An Exploratory Study of Expert Patients in Uganda: Research and Evaluation Report.” Bethesda, MD: USAID Health Care Improvement Project/University Research Co., LLC. http://www.hciproject.org/sites/default/files/Uganda_Expert_Patients_Nov11.pdf
(3)Kober K, Van Damme W. 2006. “Expert patients and AIDS care: A literature review on expert patient programmes in high-income countries, and an exploration of their relevance for HIV/AIDS care in low-income countries with severe human resource shortages.” http://www.equinetafrica.org/bibl/docs/KOBaids.pdf
(4)WHO. 2007 “Briefing Package: Integrated Approach to HIV Prevention, Care and Treatment: IMAI and IMCI tools [Revised Draft June 2007]” http://www.who.int/hiv/capacity/ImaiBriefingStrategyAug2007Sm.pdf
(5)WHO. 2008. “Task shifting: rational redistribution of tasks among health workforce teams: global recommendations and guidelines.” Geneva: WHO Document Production Services. http://www.who.int/healthsystems/TTR-TaskShifting.pdf
(6)WHO. 2012. “WHO Recommendations: Optimizing health worker roles to improve access to key maternal and newborn health interventions through task shifting.” Geneva: WHO. http://apps.who.int/iris/bitstream/10665/77764/1/9789241504843_eng.pdf
Lauren Crigler, B.A. has 15 years of human performance improvement experience, and is especially skilled in competency and leadership development and supervision in primary healthcare programs of reproductive health/family planning, maternal and child health, nutrition, HIV, and malaria. She has worked on projects that focus on assessing the health workforce and expand the evidence base for the application of quality improvement to human resource workforce issues. Ms. Crigler is a certified Systems Analysis and Performance Improvement specialist and has designed, conducted and published a peer-reviewed study on what factors affect human performance in the workplace. Ms. Crigler is the lead author of the Community Health Worker Assessment and Improvement Matrix (CHW-AIM) Toolkit, developed by the USAID Health Care Improvement project.
Anya Guyer is a Technical Advisor at Initiatives Inc. She works with several of the organization’s projects, including the SHARe II project in Zambia, the SUSTAIN project in Uganda and the global USAID Health Care Improvement project. Anya has a master’s degree in global health and population and a bachelor’s degree in medical anthropology. Her interests lie in the intersections of public health, community development, philanthropic giving and policy analysis, with a regional focus on sub-Saharan Africa.
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