During the IEEPO 2023 ‘Uniting in Action: Humanising Healthcare in Practice’ event a number of Action Hour Roundtable sessions took place featuring patient advocates from all over the world.
The overall event focused on inspiring the patient group representative community with tangible examples of action towards creating humanised, resilient and sustainable healthcare systems globally.
The Action Hour Roundtables took place in a range of languages, enabling patient group representatives to connect and share their experiences in understanding and utilising patient-generated health data.
x9 inspirational roundtables took place in x5 languages
In total, 110 participants attended the roundtables
82% of roundtable attendees found the sessions to be useful or very useful
Following the roundtables, attendees intend to engage in the following health data activities (among others):
“Building awareness” towards our patient community and other stakeholders on the importance of leveraging ‘patient data’ to benefit patients, healthcare systems and society.
“Using patient data” from our patient community to support activities like e.g. shaping health policy, Health Technology Assessments, Research & Innovation, healthcare process optimization, disease management, etc.
*feedback obtained from the post-event survey as analysed April 2023
Key insights from patient communities for patient communities as discussed during the roundtables on the use of data locally!
Collecting data and building registries
If resources allow, connect apps with registries to increase collection of information
Rare disease organisations could focus on patient registries and cross country data to strengthen healthcare systems
Connect local registries with the global registries to see the bigger picture and better understand the information
Go to where the patient is to collect data - e.g. word of mouth, social networks, online groups etc.
In-person meetings are a good opportunity for data & insight collection in countries with low connectivity
When resource-short, tap into the resources of other organisations in the healthcare ecosystem, such as, academic institutions, NGOs, pharmaceutical companies, government agencies and healthcare providers
By building partnerships with pharma industries, patient communities could find support in order to reach a wide range of underserved groups to gather and develop insights
Data and trust
Train patients to become patient experts so they can represent the voice of the patient community in collaboration with other stakeholders. Training could be relevant on health data, ethical health principles, coping strategies for living with their disease, understanding of medicines research & development, speaking & presentation skills, and how to support the creation of patient-facing materials
Sharing the patient data experience can help to remove fear barriers and give people a better understanding of the power data can have and the respect it should be treated with
The power of data
Evidence-based advocacy can help to show policy makers the scale of the problem. Data collection can - and where possible should - be shared with governments to raise awareness on existing unmet needs of patient communities.
Artificial Intelligence can could support in ensuring better quality data
Data can be used to help design tailored support programmes for patients
The patient community referenced the following areas as potential AI platforms to help understand data
GPTBoss (https://www.gptboss.com/) It includes a "content spinner" that rewrites content into a standard American 3rd grade reading level
Ipsos, DYNATA, ENBLEMA, Health Story Lines - can support the collection and analysis of qualitat
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