Advocating for Yourself and Others in the Health Care System

… an aspirational title …..

My perspective

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• Patient
• Wife
• Parent
• Daughter
• Doctor

Medicine system is broken and complicated

• Care can be fractioned
• Referral and appointments take time
• Electronic medical record systems do not all talk to each other
• Specialists don’t all communicate
• Insurance is complicated and has complicated rules, coverage limits
• Appointment times are limited

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Primary Care Provider

• Everyone should have one
• Someone to see you as a whole person
• Someone who can know your whole medical history
• Important relationship- a part of your team
• Make decisions together
• May take care of your whole family
• Relationship build over years
• Ok to change if it is not a good fit

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Fractionated Care

• Specialists
• ER visits
• Multiple health care systems

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Visits are short – make the most of them .

Strategies reduce fractured care

Have an accurate med lists, allergies, results of recent labs/tests – keep it up to date

Know what your meds are and what they are for.

Have list of specialists you see- consultants don’t always send notes

Sign up for portals and know how to access them.

Bring someone with you for a 2^nd set of ears

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VISIT TYPES- Primary Care

• Acute problem
• Chronic condition follow up
• Annual /preventative care

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Acute problem visit

• Describe symptoms – not your self diagnosis/ Dr Google
• How long
• Tell the story
• What have you tried?
• Keep to what the appt is for – time scheduled for that

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Chronic condition

• Home monitoring
• Lifestyle changes to help manage are your job
• Regular visits, lab monitoring
• Take meds regularly as prescribed
• If you are on Medicare – pick Part D plan that covers your meds

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Annual

• Medicare Wellness visit – just screening… but SMC annual is more
• US Preventive Task Force screenings covered by ACA plans
• Not all labs are covered as screening
• Have list of concerns/questions prepared and prioritized
• Report all specialists seen
• Report ER visits/acute illnesses
• Have accurate med list/supplement list

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Hospital

• Get names
• When do they round
• Write down questions
• Get plan
• Ask re new meds
• Find the helpers
• Start thinking re what you will need discharge early
• Arrange follow up with primary care after discharge

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ER

• Give them your med list
• Get clarity on plan
• Schedule follow up with primary care

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Specialist care

• Med list accuracy /consistency
• Lateral referrals – let PCP know

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Good Habits

• Goals of care/values – know how they effect your decisions
• What are you afraid it is? Say it
• Honesty
• Tell the whole story
• Take ownership of your care – you are the expert on yourself
• Get comfortable with portal – your access to your information
• Keep your own records
• Releases of information for people you want involve in your care

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Good Habits #2

• Realistic expectations
• If you don’t understand – ask for more explanation
• Second opinion
• Take notes
• Be clear on what the plan is from here, when to follow up.

Bad habits to avoid

• Adding more items to the agenda
• Asking questions about symptoms that aren’t anything you want to do anything about.
• Putting the thing you care most about at the end of your list – prioritize list
• Expecting quick fixes/magic wands
• Saving up everything till annual
• Asking about health issues of other family members your visit
• Overestimating genetics >>> lifestyle/general risk
• Diagnosing yourself
• Declining to see anyone but your PCP when you’re sick

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Bonus points

• Jokes

Portal use

• Ask for help
• Ask for clarification
• Ask for a specific piece of information
• Share an update
• Not for diagnosis, new problem – need visit
• If it needs a conversation, it needs a visit

Summary

• Actively participate in your care
• Pick a primary
• Prepare for visits
• Express your preferences/goals of care
• Work with your provider
• Ask questions till you understand
• Keep records

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