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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: homeless

The PCORI Experience - The Key

Terri Reinhart

I arrived home this morning from attending the first Annual Meeting of PCORI - Patient Centered Outcomes Research Institute. Over the next week or so, I'll be posting some short articles about this experience. They will probably be sort of random, working like my mind and memory work as I try and process all the information I received. 

Here is the first:


It hangs from my coin purse because I don't take my keys with me when I travel. The plain silver key has not been cut and doesn't fit any lock. It's a reminder of all the people who do not have keys. It's a reminder of my obligation to speak for those who do not have keys.

We were listening to a panel on the topic of Engagement of Patients and Other Stakeholders in Research. There were three groups represented,but Loretta Jones will be the one I don't forget. She and Dr. Clete Kushida spoke about their work with Healthy African American Families. I encourage you to look at their website. Loretta recently received the Honorable Diane E. Watson Community Service Award from the United Nations for her work addressing disparities in health care.

Which brings us back to the key. While Dr. Kushida and Loretta were speaking, we were handed keys. Loretta asked us about our own keys. What do they open? House, car, safety deposit box, bicycle lock, a gym locker; these were a few of the answers given. Keys represent access and assets. A house key means we have a place to live, an anchor. A car key or bicycle lock key means we have the ability to easily move out of our area and see more of the world.

There are other keys which are not visible, but are important: access to health care, access to transportation, access to education. This list is just a beginning. Who are the people without keys? The homeless, the uninsured and underinsured, those who don't have transportation to a doctor's visit, those who don't have access to healthy food, those who do not have an advocate.

At the PCORI Annual Meeting, there were scientists, clinicians, nurses, social workers, health insurance representatives, lawyers, patients, patient caregivers, patient advocates, and more. Who, among all these groups, is going to speak up for those who don't have keys?

It's the responsibility of each one of us. As a patient advocate and patient reviewer for PCORI, what can I do to bring attention to the needs of people who do not have a voice, those who are marginalized by being part of a minority group or stigmatized by a health condition? Can I look at clinical studies and try to sort out whether and how the studies will help those who have no voice - no keys?