In the first action spotlight Richard Vines, Chief Executive, Rare Cancers Australia: National Oncology Alliance Case Study, from Australia discussed ways we can achieve universal healthcare coverage and allow people to receive the healthcare services they need, when they need them.
KEY TAKEAWAY: Forming an alliance of diverse stakeholders was key to getting the Australian government to listen and think about how to bring the existing healthcare system into line with new science and technologies being developed. This is why the National Oncology Alliance formed. It became the driving force behind The Australian Cancer Plan, which was two years in development, and is now in the final stages and due to be released very soon.
“When you work with the government in a constructive, non-critical, positive, future-looking way then you can do amazing things.”
“I like to use a football analogy - the medical director or the team doctor is not the person that you make the coach or the team manager, neither is the person that makes the boots or the soccer ball. The person who becomes the coach or the manager of the team is the person who has played the game. They have direct experience and that is the most compelling argument for making sure when we talk about health systems we respect and allow patients and carers with lived experience to lead, as they will make the best coaches.” - Richard Vines
Our two speakers, Leslie Gilham, Chair, Consumer Advisory Panel, Breast Cancer Clinical Trials from Australia and Kira Baldonado, Vice President of Public Health and Policy, Prevent Blindness from the United States shared insights on how we can work together to provide healthcare which is equal for all.
Leslie Gilham, Chair, Consumer Advisory Panel, Breast Cancer Clinical Trials from Australia
KEY TAKEAWAY: To drive inclusivity and help ensure everyone has the same level of optimised personal care, there is a need for stakeholders to work together to provide a service that engages with all communities.
In Australia, geographic issues can be a barrier with many communities located in remote or rural areas. Lack of trust in healthcare systems, cultural differences and language barriers are also obstacles to engagement. One way to humanise healthcare is to support patients in their own homes and communities, instead of expecting them to travel to hospitals and clinics. Involving communities in projects to help improve engagement is key. To bring this to life, Leslie shared two specific examples,working with local communities on breast cancer screening and prosthetics initiatives using co-created indigenous art, were successful in enabling a more personalised approach.
Kira Baldonado, Vice President of Public Health and Policy, Prevent Blindness
KEY TAKEAWAY: In the US, a wide range of inequities and disparities in eye care and eye health can impair peoples’ opportunities in areas such as education, employment and social engagement as well as impacting quality of life. This was the rationale behind the creation of a coalition of patients, professional and government organisations who developed the 2016 Landmark Consensus Report for Vision to improve vision and eye health and increase health equity.
Following publication of the report, the Center for Vision and Population Health was created to use available evidence and science to translate the recommendations from the Consensus report to help improve eye health and equity at national and community level across three key areas: policy, education and surveillance. Agreed core values include improving vision health through partnership, expanding knowledge and providing support so communities can be empowered to take action and make sure that vision and eye health are included in primary healthcare.
For our third and final spotlight session, Christian Pfeuffer, Patient Advocate, Deutsche Gesellschaft für Muskelkranke, DGM* from Germany discussed how digital healthcare can be humanised to drive transformation in health-related systems and change in healthcare.
*German association of patients with muscular disorders
KEY TAKEAWAY: The Carisma App supports patients with neuromuscular disorders in Germany and is the result of cooperation between patients, carers, physicians, academic partners and the pharmaceutical industry. The Carisma App can support patients with therapy management and symptom monitoring, and importantly can create data which can be used for future research to help improve quality of life for patients. It also triggers further patient activation which can help improve patient reported outcomes and quality of care; empowerment of patients is the key to success. For healthcare professionals it enables invaluable knowledge and experience exchange.
The app was designed in collaboration with patient advocates, healthcare professionals and pharma representatives in the form of a steering committee. The committee comes together on a regular basis to discuss the development of the aim and what works well and what doesn’t, to ensure it is developed for the needs of people living with the condition.
Kira's Action Spotlight
*Please note techincal difficulties experienced during this session video recap
This session was moderated by Dr. Sawsan A. Al Madhi, Advocacy Advisor, CEO & Founder, AlignnEficient Health Consultancies from the United Arab Emirates and Ivica Belina, President of Koalicija udruga u zdravstvu KUZ (Coalition of Associations in Healthcare) from Croatia who brought together the key takeaways from each Action Spotlight session.
- Richard Vines, Chief Executive, Rare Cancers Australia: National Oncology Alliance Case Study, from Australia: “It is important to always remember that patient organisations have a right to be in the room. True partnership between governments and patient organisations can happen and it’s most effective if you remain positive and present an opportunity rather than a problem.”
- Leslie Gilham, Chair, Consumer Advisory Panel, Breast Cancer Clinical Trials from Australia: “We need to break down barriers to engagement. Currently we are trying to reduce our clinical trial exclusion criteria e.g. we want to make sure that people who speak another language than English are not excluded. We are working to get independent translators involved who can interpret the informed consent forms or patient reported outcomes to help improve involvement from more diverse communities.”
- Kira Baldonado, Vice President of Public Health and Policy, Prevent Blindness: “We need to empower patients in different ways to allow them to be engaged in our work at all levels.”
- Christian Pfeuffer, Patient Advocate, Deutsche Gesellschaft für Muskelkranke, DGM from Germany: “Accessibility of solutions is important so that people can use digital systems at a time and place that works for them. It is also important that we create more interaction points to support co-creation between patients and digital developers.”
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