Here is an idea.
Particularly with long term diseases, the treatments chosen and needed may well very significantly by values and life choices. For example, there is the dimension of pain versus awareness and communication capacity. There is the dimension of quality of life versus quantity of life.
Moreover, as we get to understand the choices we have to make, the question of what would provide quality starts to become more and more nuanced, regardless indeed of where they put themselves on the quality/quantity continuum.
For example, for one one person it might mean staying physically active for a long time. For another it might mean being mentally active. For another staying emotionally connected. For yet another being productive (getting things finished.) For another it might mean being happy.
As of now, those specializing in serious diseases are better and better at finding our what people want. And specific disease experts are getting better and better at treating particular problems.
But since some people with, for example, a potentially painful cancer care most about staying active physically, and others about being intellectually productive, maybe they need different treatments, and perhaps, as the science develops, different experts with different knowledge and connection to emerging research. (To a certain extent, the development of an expertise in palliative care is a recognition of these insights, although to the general public, that is generally associated with pain, rather than other goals.)
Similarly, for one person with Parkinson’s, the goal might be to be able to keep writing. For another it might be keeping out of pain. Again not only might the treatment need to be different, but so ultimately might be the needed expertise.
I realize that creating such new kinds of specialists runs the risk of an ever greater fragmentation of care. But surely the right way to think of this is to realize that as the risk of fragmentation becomes greater — as it will in any event — the need for coordination, navigation, management, and communication becomes greater. That problem has to be solved anyway.
Moreover, at the risk of restating the obvious, the patient partner team approach helps guarantee that the patient articulates and communicates what they want — and then gets it.