All.Can Feedback on the European Health Data Space

All.Can welcomes the European Health Data Space (EHDS) initiative which seeks to ensure access and optimal use of health data as well as digital health products and services. Efficient healthcare systems that deliver the best possible outcomes for patients are evidence-based learning systems that incorporate…

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Patient story: ‘The fact my cancer was missed feels like a failure’

This patient story describes a delay in receiving a diagnosis and struggling with the intense chemotherapy.

Patient story: ‘I never received any psychosocial support’

This patient story recounts the experience of a respondent who experienced severe anxiety and a lack of psychosocial support for himself and his wife.

Patient story: ‘There is a psychological burden on the family’

This patient story talks about the psychological impact of cancer, despite treatment being efficient and effective.

Patient story: ‘I feel that my initial diagnosis was handled badly’

This patient story shares the experience of a respondent who struggled to get the interventions she felt she needed.

Patient story: ‘I don’t know whether I’d have been given so much information if I hadn’t asked’

In this patient story, one respondent discusses the benefits of having a care team willing to answer the patient’s questions

Patient story: ‘Follow-up is difficult – and it lasts forever’

This patient story follows the experience of a woman still living with side effects many years after her cancer treatment.

Patient story: ‘It’s confusing to get mixed messages’

This patient story highlights how distressing a lack of clear information can be for people with cancer.

Patient story: ‘There needs to be more education on different types of cancer’

Isla lived with her symptoms for more than a decade before receiving a diagnosis.

Patient story: ‘There was no one there to reassure me’

This patient told us travelling a long distance to receive treatment was the worst part of his experience.