Adding the Patient Voice to Treatment for Rheumatoid Arthritis
Arthritis New Zealand is proud to be part of a world first project that seeks to incorporate the voice of people living
with rheumatoid arthritis (RA) into clinical services and help improve treatment outcomes. People with a diagnosis of RA
are invited to join the project and participate in a series of interactive surveys regarding rheumatology care and
experiences in a new initiative known as the PORTAL project. The results of the surveys will be fed to rheumatologists
and District Health Boards to improve treatment services.
Because there is currently no cure for conditions like RA the goal of treatment is to control joint inflammation and
prevent joint damage and disability. Getting the right treatment requires close monitoring and adjustments to treatment
over the course of the disease, which normally lasts a lifetime.
“There is evidence that the best outcomes in terms of patient satisfaction, compliance with treatment, and better health
occur when the opinions of health consumers are aligned with those treatment providers” says Associate Professor Andrew
Harrison the rheumatologist leading the project. “It is often hard to find ways to include the patient voice in a
meaningful way. The patient responses to the surveys will help us improve our rheumatology clinics.”
The PORTAL project will be run from the Arthritis New Zealand website www.arthritis.org.nz
People with RA patients from Hamilton, Wellington and Dunedin will be invited to join the project when they visit the
rheumatology clinics in these areas. People with RA outside these centres will be able to join from the website. Then
aim is to have at least 450 people linked into the PORTAL project. With a large number of people responding the survey
results can be truly representative and weighted to ensure they do represent the full range of ages, ethnicities and
other sociodemographic factors for people with RA. .
Siobhan Bulfin, CEO of Melon Health who built the technology to run the project said “We know that many people want to
be involved in their health care and this is an opportunity for people to really shape the health care system”
“We see this project as adding to the other work that Arthritis New Zealand does in advocating for better services for
people with arthritis” says Sandra Kirby, CEO of Arthritis New Zealand. “While this project is starting with people with
a diagnosis of RA once the mechanism is shown to work the potential for wider use is obvious.”
ENDS