Abstract
Background: The value of lived experience and advocacy for health system and policy improvement is well understood. However, there are capacity constraints for people living with a rare disease and the organisations that represent them. Although individually rare, collectively the >7000 known rare diseases impact approximately 6% of the population. Delayed diagnosis, limited treatment options and disease complexity are commonly experienced. Building capacity among rare disease organisation leaders, who contain a wealth of expertise, is a priority of the Australian National Strategic Action Plan for Rare Diseases.(1) We aimed to understand the capacity needs of Australian rare disease organisations when advocating for improved services, including integrated care, and health outcomes for their respective communities.
Approach: Semi-structured interviews with 11 Australian rare disease organisation leaders were recorded, transcribed verbatim, and inductively thematically analysed in NVivo. Using evidence from the interviews, the Australian Rare Disease Organisations Community of Practice (ARDO-CoP) was established with 11 inaugural members. Formal and informal feedback was collected and analysed to understand the perceived value of the ARDO-CoP to members, and to integrate feedback into the evolving ARDO-CoP model. Key metrics collected were network expansion, discussions hosted, and resources shared.
Results: A consistent theme was the need for more opportunities to collaborate and build capacity among organisations as a mechanism to improve integrated care and health and wellbeing outcomes. Over 12 months, membership increased to 19 people. Two members left the ARDO-CoP mainly due to limited capacity, with one nominating a colleague to take their place. Seven discussion and educational sessions were delivered; four involved invited expert speakers. ARDO-CoP members facilitated two group discussions. ARDO-CoP members chose the topics, for example accessing and informing interdisciplinary care in medicine and health; representation of and engagement with culturally and linguistically diverse communities; and inclusive transition care for adolescents and young people. Sessions were recorded, and summaries provided, creating lasting accessible resources. ARDO-CoP members shared case studies of successful health service improvements resulting from their sustained advocacy, and 17 resources were shared including research articles, frameworks, and website links. ARDO-CoP members valued knowledge and resource sharing in an open, informal and safe space, for example; “I think there's huge value in just bringing people together… and informal knowledge-sharing and capacity-building and providing forums and platforms…in an open, safe environment about the challenges that we're having, and support and help each other would be hugely valuable…” and “There are a lot of us trying to do the same thing, especially in rare conditions. You know, I think we could band together a lot more and help learn from other people…”
Implications: The value of a co-designed, rare disease-specific consumer advocacy-focussed community of practice has been demonstrated. The long-term sustainability and benefits of the ARDO-CoP will require longer term evaluation.
Reference: 1. National Strategic Action Plan for Rare Diseases. Australian Government Department of Health. https://www.health.gov.au/sites/default/files/documents/2020/03/national-strategic-action-plan-for-rare-diseases.pdf