Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

It’s been quite a year for the 20152016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships.

Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for the healthcare industry to deliver better care.

The team introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — from medical students to clinical trial coordinators. And through personal essays and interviews, each shared real-world examples of how they use these principles in their own lives.

As their term comes to an end, we wanted to share a recap of everything they’ve done. Hover over the image below and click on each member to check out what patient partnership means to them:



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4 thoughts on “Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors”

  1. Dear Team:

    Really enjoying the site however, unless you send me an email I have forgot my user name and password so I don’t know how to update the needed health information. A lot of changes to my health as I am getting sicker and could use assistance. Really concerned that I won’t be eligible for gamma globulin next year at a discount. Mom died and left me an inheritance which I am promptly spending as I need a car to get around but this is a problem as it increases my income above the $13,000.00 per year to get Hizentra. So now I could actually die without it and I will need to try to find someway to get help. Insurance has stopped paying for many of my formularies that I need to live. I can get them a little cheaper but not at a very good discount. Recently, I have flunked two EKG’s, had lateral minibus surgery with I had lymph problems and almost lost my toes. I have come down with hypothyroid and high WBC count in my urine. I think it is the cause from my server chronic diarrhea from eating the wrong foods. Also suffering with severe neuropathy at my finger tips of both of my hands. Working on this! Also have forearm and shoulder pain. Horrible IBS with stomach pain. Extreme Fatigue. Its called giving up! Any ideas?? I have a great family doctor but she wants to wait for every test and procedure as she is being followed by Medicare. So I need to move on and find a doctor who knows how to work with the system at a better health explanation. Medicare runs the show due to all the fraud and deception by these crazy people making up claims for their own personal gain which hurts us all.

  2. In 2015 I already had cancer liphoma in duadenum , stadium 4B , (4N 2T ) . And then I did kemotheraphy in Penang , to day I feel very healthy and happiness cause GOD give me second change for lives. May I share and help

  3. Hi, I m Rony 42 years old.In Jan 2015 I had cancer liphoma in Duodenum stadium 4B ( 4N 2T) I couldn’t eat anything. The Doctor in our country said my life only 3 months more. However I never give up, and did kemotheraphy in Penang. After that doctors penang said I clean and Health. To Day 21 Sept 2016 I feel healthy and Happines , God give me second change for my live.
    I want to share,help and useful for many people that’s My mission in my second change life’s.

  4. Very nice, a thought on the word patient as a descriptor. I’m Pete for example not a patient. I have done a lot to train my ALS clinic team not to use that term. I love this site for what it does in allowing those of us living with ALS to have a forum to discuss our journey. Thank you.

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