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Real Participatory Healthcare starts with assigning the patient in to your team !

So why don’t we ask the experts about how to change healthcare. If your answer to that question would be “We do !”, please tell me. Tell me how and tell me who in your opinion the experts are. Doctors, nurses, policymaker, assurers ? Great !

All true, but there “some” more experts, al least the ones HAVING the disease to asked up front when making plans to REshape healthcare. Mostly they’re asked when plans are in last stage, just before enrolling them, able just to finetune the plans.

Also in my opinion their family and other co-caretakers are to be asked. They have to be part of your team. They will in the end in acting, choosing and helping to fight the disease anyway, no ?

Both are THE experts in having and experiencing the disease, knowing what it means to undergo the pain, the moods, the hickups in logistic i.e. and also the challenges healthcare is giving them. Knowing what it takes to have a husband or wife who has it, and which information for instance you would like to have had at that point.

Just have a look to the video where airlines act like healthcare :

In the graph below i’ve tried to catch my vision on this matter and will be refining it lateron, but wanted to share with you upfront, and do a little crowdsourcing.

What do you think, am i on the right track in your opinion, what do i have to change ? I will changing at least the chronological order in it, since it can be any way around, and not allways in this order. Also it will have to be bi-directional, no ?

Please leave your comment below, and  thanks in advance !





Lucien Engelen

8 replies

  1. Isn’t it the other way around? The patient accepting you as his caregiver? This once again seems like thinking from the caregiver’s perspective " assigning the patient in to your team". I know it is probably not how you feel… 🙂

  2. I would not draw a circle, I would draw a distributed network! The important part is do connect the different parties by there individual needs and standards of knowledge and access to technology.

  3. @lodewijk, yes you know me well enough to know where i’d put the staring point. I have to fine tuning graph, communication has to be 2-way, and there is ANY startingpoint. Agree ?@zeno agree from tech perspective, but HC is also about compassion, knowledge and communication (as you know since you’ve visited my talk;-) I am looking for a graphic model to show the (new) way participatory HC could be presented. I’ve showed this graph to some HC-pro’s already, for some, taking patient and fa,ily into team is "NEWS" ;-(

  4. I also agree that the knowledge and the content sharing should be bi-directional, cause this is what really happens between the actors you identified. On the other hand, I think that the edges characterization that link them (for instance patient-family, patient-physician) could help to understand when, why and how the relation started.

  5. @lodewijk teher are many ways is presenting this food for thought. Putting the patient in the middle for me expresses more a role for patient that is inactive, following. Putting him/her into the circle, and there are many starting points, is a more pro-active role. as said many roads lead to Rome ;-)@zdavatz for me the WHERE question about data is not very interesting. What matters is THAT patient and other caretakers have access to the actual data, and all can see the same data. For patients may be this needs a sort of translation of i.e. all the histology into whats this in normal language and whats good news, what isn’t.@Samuel Moniz agree !

  6. @lucien well the WHERE part can be important. But I can tell that you prefer a centralized approach. I think if the approach is to centralized then the whole system is a lot more prone to hacking, privacy concerns, etc. If the system is distributed the balance is much better. But I am happy to be wrong 😉

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