Similarly, employing expert patients in the health services
“can achieve better adherence patterns, reductions in stigma, provide positive
role models for clients, and lead to a reduction in lost-to-follow-up (LFTU)
cases and other improved health outcomes,” said Taru Jaroszynski who presented
findings on the strengths and weakness of the Expert Patient Programme, run by
Paediatric AIDS Treatment for Africa (PATA).4
“But we have a long way to go before
treatment teams learn to fully engage expert patients and maximise their
contributions to a multidisciplinary team.”
The Paediatric and Adolescent AIDS Treatment for Africa
(PATA) is a network of treatment teams at more than 130 paediatric clinics in
23 countries scattered across Sub-Saharan Africa. PATA hosts forums with teams of doctors and
nurses and counsellors and pharmacists, meeting in a collaborative learning
environment to discuss their successes and challenges in paediatric treatment,
care and prevention and to set quality improvement tasks for the year ahead.
“At the PATA forum in 2007, a common challenge articulated
by many teams was the lack of human resources within clinics, which was leading
to long patient waiting times and limited psychosocial support services, and
ultimately resulting in compromised quality of care,” said Jaroszynski. In
response, PATA launched the Expert Patient Programme, funded by One to One
Children’s Fund. This programme was modelled on the Partners in Health
accompagnateur programme. The goal has been to include people living with HIV
in the multidisciplinary treatment teams, and provide employment, training and
an income for people living with HIV/AIDS.
They were called expert
patients in acknowledgement of their expertise in ART adherence, and their
knowledge of the clinic, based on their own experience of living with HIV or
caring for a child affected by HIV.
How PATA teams began
incorporating expert patients
The PATA Treatment Team typically
consists of a doctor, nurse, pharmacist and counsellor working together in a
facility. Jaroszynski says that they have
usually first been exposed to the expert patient programme at PATA Forums.
“The team may identify a need for
task shifting in their clinic. The team must then examine their own process and
identify the tasks that need to be shifted and the other services that can be
provided by an Expert Patient/s. They need to consult local labour laws and
policies and develop a plan on how to use the (US) $216 per month provided by
the programme,” she said.
The team is responsible for
appealing to clinic management for permission to run the programme and then
they have to recruit, train, supervise and mentor the expert patients in their
role.
“The ultimate goal is to have the
Expert Patients fully integrated in the Treatment Team, as a key member who
brings new knowledge, skills and a deeper community understanding to the team
and helps in the continuous quality improvement project,” said Jaroszynski.
This approach to task shifting can be adaptable to address the needs of the
specific clinic and is driven by a team of frontline health care workers. But
that also means there is a lack of standardisation and in some cases no
overarching national endorsement of task shifting.
PATA’s Expert Patient Programme
has been running for five years with 182 Expert Patients working in in 49
clinics in 14 countries. Each clinic employs about three to four expert
patients who work about 25 hours per week. Monthly wages for the Expert
Patients vary widely from $7 dollars to $250.
The majority of Expert Patients are women, most of whom were previously
unemployed.
Evaluating how Expert Patients work in practice
But to better characterise how and
what expert patients were doing, and how well the programme was doing,
Jaroszynski and colleagues performed interviews and combed reports over a two
year period, analysing the data by using a thematic content analysis.
They found that expert patients are being employed to
perform a wide variety of tasks within clinics. This
has enabled clinics to expand their repertoire of services. For instance, at
one clinic in Transmara, Kenya , Expert Patients conduct
home visits and act as treatment buddies - a service that would not exist
otherwise. Teams at the clinic report they benefit from having more time to
spend with patients, as a result of expert patients freeing up their time,
according to Jaroszynski.
Clinics are more child-friendly.
For instance, at Groote Schuur Hospital in Cape Town, caregivers are able to
enjoy private consultations with doctors or nurses because children are looked
after by the Expert Patients. Clinics are also more adolescent-friendly. In
Zimbabwe, older adolescents are employed to act as peer educators and support
group facilitators.
Now employed, many expert patients
report improvements in the quality of life for themselves and their families.
”There are better links between
health care teams and communities as a result of the under-acknowledged community
liaison role that expert patients fill.
Expert patients often fill a 'cultural broker' role helping patients
navigate to and around the clinic,” said Jaroszynski.
So on the plus side, “people
living with HIV/AIDS have great energy and passion and are a incredible
resource for busy clinics and thus must be fairly remunerated to ensure that
their value is acknowledged,” said Jaroszynski. “Clinic qualitative data has
linked the programme to better adherence patterns, reductions in stigma,
positive role models for clients, a reduction in lost to follow up cases and
other improved health outcomes.”
Dropping the other shoe
However the Expert Patient
programme also needs to consider how the programme is working for the Expert
Patiets themselves. A recently created Expert Patient Review Committee is grappling with difficult issues regarding
how the programme is working on the level of the expert patient as an
individual, the clinic and the overall management. Jaroszynski highlighted a
few of the programme’s challenges.
”At an individual level Expert
Patients have poor job security and limited career advancement,” said Jaroszynski,
and even when they are doing their best, the clinics are failing to fully
engage them. At the clinic level, clinic staff need to be trained on how to
mentor and supervise expert patients so they are included in the team and basic
good employment standards are met.
”Policies need to be developed to
safeguard expert patients — and this includes more stringent guidelines for clinics
on employing expert patients. However, the greatest challenge at a management
level is the poor integration of programmes such as the Expert Patient
Programme within an overall district plan and the limited cooperation of NGOs
at a local level,” she said.
In some clinics, expert patients
form part of a larger body of community health care workers funded by different
organisations. But the different funding streams and NGO approaches “results in
inequality in pay and benefits; confusion over lines of reporting; different
names and titles for community health workers doing the same tasks;
professional jealousy as some community health care workers have access to more
job security, career advancement and training opportunities; and pettiness and
competition between different NGOs is a huge difficulty,” said Jaroszynski.
These are not minor problems, but she believes
that the PATA network may provide the ideal platform for bringing together
stakeholders working with community health care workers in local contexts, to
strategically plan how such programmes can become more integrated within an
overall health plan.
”We are hoping to start this
conversation now!” she said. “Until such a time as the Health Departments are
able to provide clinics with funds to task-shift to improve the quality of care
in clinics and include community members in health care treatment teams, there
is a need for NGO-run programmes such as the Expert Patient Programme.”
However, she also pointed out that
this presented something of a catch 22, since NGO engagement in filling this
need may contribute to health department inaction.
”Our challenge is to channel energy into
advocating for the widespread adoption of these programmes so that they are
recognised as an integral part of the health care system,” she concluded.
“After all, our children and their families deserve the highest quality care.”