What is patient advocacy?

Patient advocacy is a programme or platform whereby patients through education, support, guidance and advice achieve the best possible care for their disease.

On an individual level this may be understanding, accessing or overcoming obstacles to the care offered by your health insurance company, on a community level raising awareness about your disease, its diagnosis and treatment while on a national level, campaigning for changes to healthcare legislation that affects your specific disease. A patients advocate is informed about his/her disease and its treatment, is familiar with healthcare legislation affecting their condition and actively participate in decision making with their healthcare providers.

Advocacy vs Activism

Advocates work within existing structures and through a deliberate process of informing and influencing decision makers facilitate evidence based policy change. Activism is a confrontational demonstration or action in opposition to, or support of, a cause.

IBD Africa Advocacy

IBD Africa has a mandate to improve the care of IBD patients through research, education and advocacy. Our advocacy project has lagged behind our other endeavours and has consisted of ad hoc interventions aimed at challenging medical aids who deny patients access to IBD treatment. We have represented patients at Council of Medical Schemes hearings and have provided advice and support to others.

In September 2022 IBD Africa hosted its first Patient Advocacy Summit in Cape Town sponsored by Abbvie. Fifteen patients attended this 2 day meeting held at the Vineyard Hotel. Patients with autoimmune rheumatological and dermatological conditions were also invited. Facilitated by Lauren Pretorius, CEO of Campaigning for Cancer, this meeting deconstructed patient advocacy into easy to understand concepts. Four key advocacy issues (advocacy issue = problem + solution) were identified for action and a seed has been planted for this to grow into a much larger component of our organisation.

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