Patient "Activist" Meeting

An Invitation to Meet With Patient "Activists"

Trisha Torrey, Every Patients Advocate
and Ilene Corina, PULSE of NY

I was chosen one of 50 people to attend the Institute of Healthcare Improvement conference and meet with 50 patient safety “activists” from around the country. It was both a humbling but exciting adventure. I heard there were 92 applicants, 50 were chosen and I know of at east 10 people who never even applied. There are many of us out there!



Alicia Cole ASAP, Ilene Corina, PULSE
and Linda Kenney, MITSS



I was only there for the Saturday night meeting and Sunday workshop that we all had an opportunity to meet each other, get to know each other and share some of our dreams and sorrows that brought us together. It seems that at some point, all of our paths have crossed and we knew of each other or knew each other well. Our goal – to decide on a goal……

I believe sharing was the most common thread. Many people who have had bad outcomes want, and need to share their stories. They do this through their work and reach more people. I was impressed with the many professional groups that were started out of their grief. Just to mention some who were impressive;

Honoreform.org from Nebraska is dedicated to protecting patients through safeguarding the medical injection process.

The Safe Care Campaign started by the Nahum family has become a trusted expert in infection control and works closely with the CDC.

Alicia Cole has also become an expert in hospital acquired infections after battling her own for years. She formed Alliance for Safety Awareness for Patients and many people get support and information from her organization. 

And of course Trisha Torey from Every Patient’s Advocate has helped to keep many of us connected.

Many of us keep blogs such as Ken Farberstein who encourages story telling. 

Some have written books such as;
Bart Windrum who wrote Notes From the Waiting Room.

Or Jari Holland Buck who wrote the Hospital Stay Handbook. 

Dr. Cari Oliver wrote The Cautious Patient (and underwrote much of the meeting).

Patty Skolnik started Citizens for Patient Safety in Colorado travels the country lobbying for all our safety following the death of her only child, Michael. We can all learn something from her professionalism in this field.

Lori Nerbonne founded New Hampshire Patient Voices after numerous flaws in the healthcare system killed her mother. 

I didn’t get to spend nearly enough time with my friend Kathy Clark of Servant Lawyership.

I was so happy to finally meet Dianne Parker who has shared her husband’s story about his untimely death from a hospital acquired infection.

It's always good to see Cathy Reuter from Surgicalfire.org.

It was actually the first time all PULSE representatives were together, Doug Hall from Florida and Jennifer Dingman, Colorado and myself.


Doug Hall, Ilene Corina and Jeni Dingman
PULSE



I was glad we got to laugh a little, cry a little and recognize that although we come from different places in pain, in time and in demographics, we are all joined at the heart because of our pain, lack of trust and / or anger because of the people and places we trusted, that ultimately caused harm. I am grateful for my new, and old friends.

Communication is Critical

Communication

It happened again, someone is “reading with an attitude”. I call it that because that’s what happened when someone reads something, and then interjects their own emotions into it. Read this sentence without reading any words stronger than another; “She never checked the closet”. Now read the same sentence and emphasize the words “never” and “closet”. Seems kind of accusatory, no?

I use this as part of my Critical Communication training. This is communication that includes nonverbal conversation. Wars can be started over how something is perceived. Friendships lost and business deals can go bad. I like to “assume good intentions” when I read something. It is often better that we read everything flat, with no emotion and assume the sender means well. It’s easier to get something out of a correspondence when we aren’t putting emotions into it.

Making meatloaf is part of the critical communication training. How we hear things, read things and of course how we present ourselves, especially under stress, something that happens easily when being diagnosed with an illness or just being intimidated in a doctor’s office. Stop and think how other’s may perceive your e-mails or letters when writing and then when you receive something questionable, assume good intentions.