GHGA in dialogue with patients and caregivers

picture taken at the NCT Patient Conference. Taken from the back of the room, it shows the audience and speaker plus screen.

Under the motto ‘Achieving progress together’, NAKSE brought together stakeholders from self-help groups, science and politics in Berlin on 18 and 19 September to discuss rare diseases. The participants agreed that patient perspectives are indispensable – not only for research and care, but also for political decisions. Sustainable progress can only be achieved if those affected are heard and understood. GHGA took note of the ideas presented and exchanged views with representatives.

GHGA team member Johanna Stegmann presented a poster on current developments in GHGA. The focus was on how shared data use can help in the diagnosis and research of rare diseases. The importance of data sharing was emphasised in many personal conversations. NAKSE was organised by the patient advocacy group ACHSE e.V. and the Centres for Rare Diseases.

From 26 to 28 September, GHGA team member Eric Placzeck discussed with patients and medical professionals at the NCT conference ‘Patients as Partners in Cancer Research’. The overarching theme of the event was the role of artificial intelligence (AI) in cancer medicine. 

Among other things, the presentations illustrated the added value that AI already offers in medical practice for certain applications. Examples include the evaluation of tissue images and medical documentation. The technology is widely accepted for these areas.

However, the technology needs good management: after all, any AI is only as good as the data it has been trained on. Cleanly structured and annotated data is the key to reliable results. Professionally organised data management is therefore extremely important: it is the basis for fully exploiting the potential of AI for healthcare and research.