The panel discussions convened all speakers from the lightning talks as well as two members of the IEEPO External Advisory Committee (EAC) to provide the patient perspective: Durhane Wong-Rieger, President and Chief Executive Officer of the Canadian Organization for Rare Disorder and Kin Ping Tsang, President of Retina Hong Kong and Rare Disease Hong Kong. The panellists discussed some of the biggest learnings during the crisis, their take on preparedness and ways in which to gain attention from stakeholders when there are competing multiple urgent priorities.
KEY TAKEAWAY: Healthcare needs to become more resilient and in order to do this we need to ensure we empower others to take action whilst ensuring all voices are at the table.
Advocacy remains at the heart of putting the patient at the centre of healthcare but whilst we can advocate change there needs to be the will to implement that change. That change can only happen if we articulate our voice and ensure we are clear of what the ‘ask’ is, what we require from stakeholders. We need to keep pushing, keep engaging and use digital technologies, where required to enhance those engagements.
Click below to watch the AM panel session from the Uniting for Change: From Crisis to Crisis Event!
Click below to watch the PM panel session from the Uniting for Change: From Crisis to Crisis Event!
“We as patients need to be climate activists, we as patients need to be conflict activists. We are all part of that humanity.” - Panellist, Durhane Wong-Rieger, President and Chief Executive Officer of the Canadian Organization for Rare Disorder, Canada
“Everyone of us will be a patient at some point, it is not a question of ‘if’, it is a question of ‘when’.” - Moderator, Bastian Hauck, IEEPO Moderator and Founder of #dedoc°, Germany
“The key word that came out of today’s panel for me, has been accessibility and how we can ensure accessibility of healthcare.” - Panellist, Ashley Lashley, Executive Director of the Ashley Lashley Foundation and UNICEF Youth Advocate, Barbados
“All the best plans you can lay in the world and then comes whatever will come to you. We’ve had to realise that we have to be on the ready, we’re working to be more flexible as a company, adapting our style and approach so that we can be ready for change, crisis or any other issues that arrive… we also need to support continuity of care for patients.” - Panellist, Rebecca Vermeulen, VP Global Patient Networks Roche, U.S
“Never lose the opportunity a crisis gives you, it gives you the opportunity to rethink, reimagine and restructure our healthcare systems.” - Panellist, Dr. Charles Alessi, Co-founder and Chief Clinical Officer éditohealth, Spain, England, France
“Diversity, equity and inclusion (DE&I) is important, in a crisis, different people have different needs. We need to respect DE&I to provide care to all people.” Panellist, Kin Ping Tsang, president of Retina Hong Kong and Rare Disease Hong Kong.
“Both healthcare consumers and healthcare providers want to keep their foot on the pedal when tackling climate change, they see it as important as COVID.” - Panellist, Fiona Armstrong, Founder of Climate and Health Alliance, Australia
EVENT POLL RESULTS:
At the start of the event, Bastian posed two questions to the audience which fed into the panel discussion. An additional three questions were then asked before closing the event. Below are the final responses that we received from the IEEPO community live during the event.
Question One:
The pandemic has had a negative but also positive impact on our work such as furthering digital health and working remotely. How would you rate the OVERALL impact on your organisation’s work?
Question Two:
Living in a time where we are all facing multiple crises and there is more competition for resources and attention from individuals and governments - What impact is this having on your issues/ daily work? Describe in a few words the impact it is having.
Individual responses and examples shared by the event attendees:
- “The institutions attention seems to be focused on Health problems, possible improvements in the HS are identified but they are hardly implemented due to other urgent and unexpected problems linked to new emergencies (i.e. refugees, energy crisis etc.) which require enormous efforts either in terms of economical resources to be spent or in terms of political discussions to reach a common agreement on possible mitigation actions.”
- “Forced much more time online. Lack of personal contact with members and related healthcare professionals. Destruction of in-person pulmonary rehab sessions and support groups.”
- “Increasing the intensity of the workload on our team. Delaying decision-making and commitment, affecting financial stability and with inflation increasing costs for operations.”
- “Financial crises - our organisation depends on public funds, as a result of COVID we are limited due to the overall collapse of the economy. Organisation can find it difficult to stay in operation."
- “The impact is both negative and positive for me. Negative because of the pressure everyone is under and positive because it brings out the creativity to solve problems.”
Question Three:
Post pandemic, how optimistic do you feel about driving your projects forward, under the risk of potential future crises?
Question Four:
Which other future crisis do you feel is likely to affect your work negatively?
Question Five:
Despite the risk of future crises do you think we can still gain the attention of stakeholders to focus on Humanising Healthcare?
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