Hosted by Andrew Schorr, America's healthcare storyteller and 13-year-leukemia survivor

No matter how "healthcare reform" plays out, each of us, as healthcare consumers, can take steps to get the best care for ourselves and our loved ones. We can, in effect, be more "powerful patients."

On Sunday, November 15th, 2009, at a community center near Seattle, 150 doctors, nurses, patients, and family members gathered to discuss "How to be a Powerful Patient" in very practice terms. We believe, this was the first event of its kind, and an event we hope to reprise in many other cities with the help of devoted patient advocacy groups and enlightened healthcare providers and their organizations.

The audio and transcript of what was said are posted below in segments and as an entire record, and video interviews will be posted soon.

We'd love your suggestions and to keep you up-to-date as we expand our activities, including publishing the book, authored by Andrew Schorr with Mary Thomas titled "Patient to Patient: A Web-savvy Survivor's Guide to Facing Medical Crisis." Please make sure we have your contact information below.

• When you check in with the front desk ask if the doctor is running on time.
• Email when possible
• Get to know how the office flows.
• Bring all necessary info with you/medicine schedule, etc.
• Be on time to your appointment
• Have questions/ concerns written down
• Let your doctor know upfront (at scheduling) that you need time to discuss questions.
• Email questions to doctor before you come for your appointment so the doctor can be prepared
• Schedule apt for the mornings before the doctor starts running late.
• Schedule for the last appt of the day when the doctor is willing to take more time knowing that no one else is waiting.
• Find a quality doctor that you like that is willing to take the time you need.

• Finding the level of quality you need/want before you schedule a visit
• Getting the right information
• Knowing where to go to get specialty care
• Knowing when to ask for specialty care
• Knowing who to trust and how long to wait before asking for a 2nd opinion
• TIME: Doctors are often rushed and need to keep to schedule
• The doctor’s support staff is always an obstacle
• Knowing what quality is and who provides it, MQAC is worthless, Ads are usually a sign of low quality, small towns and inner city are less costly than a downtown doctor

• Make sure that procedures and visits are all coded properly on statements. I have found 3 mistakes on statements in the last year.
• Out of my own pocket but try to escalate your issue with the insurance company first
• Get a pre-approval for the procedure prior to your visit
• Vote for democrats
• Don’t give up your efforts with the insurance company
• Talking to the manager of your insurance company, call the insurance commissioner, communicate with your doctor’s office
• Talk to hospitals, other patients,
• The Chronic Disease Fund pays for my MS meds up to 1K per month
• Lots of calls to insurance company
• I have medicare and a supplemental insurance plan so luckily it isn’t much of an issue

• Phone calls
• Emails
• Letters
• Stay on top of them until you get a response/ Squeaky wheel
• Establish good rapport with the clinic staff/admins
• If the office staff is uncooperative communicate that directly to the doctor because it is a reflection on him or her
• I talk to the nurses and use them as a liaison to the doctor. If it is urgent then let them know, but don’t cry wolf.
• I call or email and most of the time I get a response the same day. New doctors are especially difficult to reach and you are lucky if they even discuss your test results with you.

• Remind them of the problem with your grandparents/ or their parents
• Involve them in the process, make it more collaborative, make it part of an outing (lunch drive, etc)
• Avoid it seeming like they are a burden
• Listen carefully and be respectful, respect their wishes
• Have a living will
• Ask your kids for help when you need it and make sure that they are aware of your medical needs/condition
• Be involved in their lives when their health is good

• Lead by example
• Encourage family activity, provide healthy food choices.
• My wife and I make suggestions and we even follow some.
• Literature
• Set an example of eating well, exercise and proper amounts of sleep.

• Internet
• Talking to people/friends
• Doctors
• Media: radio/tv
• Primary care physician
• Specialists
• Hospital
• Support groups

• Learn what you can about the illness and be a good supportive friend, don’t avoid the subject
• Maintain a supportive positive attitude
• Don’t give advice as if you know more than the doctors be supportive and a good listener
• Join support groups
• Be available to your friend as they need but don’t push yourself on them

• Ask questions, Take charge!
• Be an informed patient and come prepared to appointments
• Communication is key, give the patients the information they need to be good patients
• Make me let you be involved

• Ask your provider, talk to research facilities
• Ask about pros/cons of treatment and weigh the risks
• Talk to specialists at academic medical centers (UW for example)
• Take part in the research
• Use clinical trials with extreme caution.