Health consumers need to part of the research, policy and clinical care conversation at conferences.
Consumer lived experiences and perspectives are increasingly seen as key components in shaping decisions about health policies, research priorities, models of care and clinical practice.
As such, CreakyJoints Australia and our parent organisation, Global Healthy Living Foundation (GHLF), believe it is essential for health consumers to participate in all conversations that relate to access to treatment, safety or the quality of their care. This includes participating in medical conferences at all levels.
We’ve deliberately used the term “consumers” in this context as it includes:
- patients currently receiving care in a health service setting
- past or potential future patients (including otherwise healthy patients using health technologies)
- carers
- consumer representatives/advocates.
In addition to participating as conference attendees, consumers should also have more opportunities to participate as presenters, panellists and exhibitors. This allows us to share our diverse voices on matters such as what it feels like to live with a chronic condition, what we like and dislike about various treatment forms, and how we would like to see the healthcare system function more effectively. This leads to more relevant and impactful outcomes for our community.
Conferences are not only beneficial for sharing information and insights, but they also create exciting opportunities for networking and future engagement between consumers, researchers, health and industry representatives, and policy creators.
How our organisation contributes to medical conferences
Our US-based CreakyJoints and GHLF teams regularly present their own research findings at medical conferences and in peer-reviewed journals, so that healthcare professionals around the world can benefit from our members’ insights.
Team members and patient advocates from across our organisation also regularly participate in international rheumatology conferences (including the Australian Rheumatology Association’s ASM) as panellists and exhibitors.
We make it a priority to share research findings and other important rheumatology news with our global patient community by providing media coverage of the events through our websites and social media platforms.
Barriers to inclusion
We acknowledge that, as a global patient organisation, we get more opportunities to be involved in such events than smaller organisations or individual consumers. However, we still face many of the same barriers as other health consumers.
Attitudes
One common barrier to better inclusion is the (usually unconscious) perception that organisers and health industry professionals have of consumers in the first place. For example:
- Not recognising the value of hearing health consumer voices at all levels.
- Being uncomfortable with viewpoints and processes that might challenge their thinking.
- Being a bit scared of what consumers might say or ask of them.
- Believing consumers would not be interested in or understand the content normally presented at conferences.
Access
Physically getting to an in-person or hybrid (combination of in-person and online) event or moving around venues can be challenging for many people who use mobility aids, suffer from chronic pain or fatigue and require regular rest breaks, adhere to specific diets, or need carer accommodations or quiet areas.
Registration, transport and accommodation costs can also be too expensive for individuals (especially those on lower incomes or from rural or regional areas) or smaller organisations with limited funding.
It’s important to note that it’s not just consumers who have these access issues. Speakers, panellists, exhibitors, organisers and support staff may face them as well. Also, not all needs can be satisfied and some may even be conflicting. For example, online events can be beneficial for some but prohibitive for those with low computer literacy, language barriers or poor internet access.
Catering for diverse access requirements across multiple areas increases planning time and financial costs for event organisers, especially for hybrid events. Often, finding solutions for all these barriers is simply viewed by organisers as being too hard or costly so they don’t pursue them. However, it is essential that organisers strive to be as inclusive as possible and to create an environment where consumers feel supported and welcomed.
Solutions
Janelle Bowden is the Managing Director of AccessCR, an organisation that provides support for those participating in and contributing as consumer partners to research. She is also an experienced health consumer advocate. One of Janelle’s passions is to facilitate ways for more consumers to be involved in medical conferences.
“It starts with mindset. If there is no mindset to inclusion, it is easy to find barriers,” says Bowden. “We need to think about what we lose if we don’t include consumers. Then we will find the motivation to solve the perceived barriers. I find when mindset changes, solutions are often found.”
CreakyJoints Australia believes there are three key areas where changes can be made to allow consumers to make a greater contribution to medical conferences.
Subsidising or sponsoring attendance costs. The value of having more consumers at these events can sometimes justify the cost of covering some or all of consumer attendance costs. This may be an area event sponsors may be willing to subsidise.
Creating opportunities for consumer involvement at all levels. Consumers can contribute to the planning of the conference and provide insights for areas such as topic relevance and event accessibility.
Making hybrid models standard for all events. The lockdowns over the last few years have shown us the many benefits of using technology to work, study and access events from home. This includes accessibility, flexibility and convenience. Yet, there’s nothing like physically being in the same room as others to see their faces and respond to their energy. Just as many businesses have developed and embraced hybrid approaches to get the best of both worlds, many event organisers can adopt hybrid models as the way forward, too.
We believe medical conferences have an exciting future and we look forward to participating in them in as many ways as we can.
Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.
CreakyJoints Australia would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community. creakyjoints.org.au
