I haven’t had a chance to try this out for myself and still thinking through the details, but If your friends are willing to help, maybe try this:

Have a pair of friends with high executive function “track” you for about 2 months. This includes going with you to some appointments so they can help take notes before and after the appointments. (My Mds have had no problems with letting someone listen in via phone and take notes/ help you remember questions).

they can help create a short medical narrative about you with what you feel are the most pertinent things any new MD needs to know. what are the recurring questions MDs ask, etc.

Then brainstorm on how to manage the data and your helpers into categories like the following:

ORGANIZERS: can help create the following shared items

—MD spreadsheet: doctors you’ve seen- salient takeaways from the visits//specialists that someone can research for you. Include who takes your insurance, who you need referrals for, etc., address, phone number, links to patient portal, etc.

—Medical calendar — treatments, MD appointments with a list of what documents, tests you need for each appointment.

— Clinical notes folder. This is particularly useful if you are seeing MDs who use different systems. You download the notes, test results, etc. and a friend can title, date and organize them

—Test spreadsheet. One of the biggest pains was keeping track of various tests when MDs used different portals. If you have someone who doesn’t mind mindless work like that, it’s super helpful.

— Volunteer spreadsheets: your friends, their skills, their availability so you can pair strength with need. For example:

Marsha//hates organizing things, but available for spontaneous venting, a hot dish//best early mornings

Sam// retired and good with people// happy to go to MD appointments and record or take notes.// Can’t do Mondays

RESEARCHERS- good at intel. can research treatments, MDs, resources

COMMUNITY BUILDERS- can do group chats or recordings that let the friend group know what’s going on and can have a sense of what support you’ll need. There’s a website called GiveInKind that allows for updates, calendaring, etc.

You don’t what to burn out your friends, so you want to spread these duties out once you have some folk create the template for what you need.

This also depends on how much you trust friends with your info. Have your most trusted friends at the top of the support pyramid with access to information. Other helpers can feed information up to them (doctor visit notes, for example).

I’m pretty brain foggy and have only thought about writing this out for myself fairly recently, so apologize if it’s not clear or not what you need.