If patients are so important ...

If patients are so important ...

Why are so few efforts made to detect diseases at an early stage?

Why are patients not invited to develop health policies about their disease?

Why don't their organisations get funded by the authorities?

Why is nobody tracking health outcomes in a systematic way?

Why is nobody evaluating their patient experience after treatment in the hospital?

Why are they not systematically involved in the decision-making on the approval of new technologies?

Why are they not systematically involved in the decision-making on the approval of pricing and reimbursement of new technologies?

Why is the health budget only distributed among doctors, hospitals and industry?

Why are there no public and up-to-date registries for all diseases?

Why is everybody saying "yes, of course", "that's bad", and "we see your point", and then go back to changing nothing at all.

Why not use their energy to move things forward?

Why not rely on patients to tell you which decisions to make about patients?


Sorry, just asking ...

Christopher Adams

Senior Rheumatologist at Premier Rheumatology of Alabama

6 年

Stefan, I presume you are speaking of patient engagement in European-style healthcare care, but it is also an issue for US-style healthcare. The answer for a cost-driven health delivery system is "patients are the cost" - treating their illness IS the expressed goal of 'the system' but it is also paradoxically the main driver of cost for the system. This means that if health care delivery administrators can focus on a bunch of management metrics, they can distract 'the system' from focusing on true health care needs - or so it appears.

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Judy Smith AM

Client Advocate at Royal District Nursing Service

6 年

I agree. And from the beginning not just at the end to evaluate how thing went Patient engagement is not something you dig into every so often. It should be at the core of clinical services and patient engagement

Dr Amanda Keenan ??

Innovation, Social Technology & Human-centred Change Leadership?? Human-led Digital Transformation ???????? Capability Uplift & Coaching ?? Researcher, Author, Speaker & Cool Kid ??

6 年
Wes Michael

President, Rare Patient Voice | Helping patients and caregivers share their voices

6 年

Couldn't have said it better myself! Rare Patient Voice exists for the express purpose of involving patients. Get their opinions!

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