Organised care, the self-reliant patient and the community
It is strange that in this XXIst Century, we still have to explain the added value of patient organisations. But OK, here we go. The core of this argumentation comes from the disability researcher Dan Goodley.
Basically, our healthcare system has organised care to provide medical support to people affected by a disease or disability. This medical support and the connected social services are often very complex, and offer incomplete services. On the other hand you have the patient and family, who are expected to be fully self-reliant in the face of disease.
Organised care is not perfect. Many, if not most, of the healthcare professionals active in the healthcare system have no idea what it actually means to live with a disease. This is not because they don't want, but simply because they can't. The information provided to the patients is therefore incomplete or not adapted to the personal situation of the individual. Many wrong assumptions are made by organised care because of a lack of knowledge of the real patient situation.
The self-reliant patient is not perfect either. Patients often lack the health literacy to fully understand what is expected from them, or they misinterpret the information, or they have other life issues that interfere with a perfect treatment. As a consequence, only around 50% of patients adhere to their treatment as prescribed.
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The solution is to add a third party to the process: the disease-specific patient organisation. Because it is constituted of other patients who have gone through the disease, and who have dealt with many of the existential, relational, professional, physical, mental and other practical issues that the patient is confronted with, they can assist, inform, educate, support, navigate and otherwise help the patient to have the optimal benefit of the treatment. By understanding and knowing what the problems are that the patient community is confronted with, they can circle back to the official healthcare providers to help adjust and improve their interventions.
This is all so obvious and clear that it is a shame that this is not the standard model in many countries. If patient organisations receive the necessary funding to have the capacity to deal with these basic patient services, "organised care" would significantly improve, the patient would greatly benefit, and the overall effectiveness and efficiency would also increase, resulting in better care at a lower cost.
We need patient organisations with the right level of competence and capacity to play this role. Their perspective and services are complementary to the medical perspective, and together they can lead to optimal care. Therefore public funding of patient organisations is an absolute necessity.
President The CML Society of Canada
5 个月Thoroughly agree that patient advocacy groups should have access to public funding. Particularly in this time of increasing awareness of the need for VBHC to improve, protect and expand healthcare systems, and most importantly ensuring that universal publicly funded health care is accessible for all. VBHC’s success relies on patient involvement by defining PROMS and PREMS. It only stands to reason that this is the third pillar of healthcare! Thank you for sharing!
Présidente at MelanomeFrance and Vice-president of Melanoma Patients Network Europe
5 个月Thanks for this Stefan, agree with much of it, but I do think Patient Organisations often need an independence to criticise the state too, which in some circumstances is hampered by dependancy/rules on government funding.