Patients Connected Like Legos 6

People of all ages love Lego toys. Some play with them just for the fun of it, while others (myself included) create their own imaginative concepts. For Regina Holliday, founder of The Walking Gallery, legos are another artistic way to cast vision.

Jerry Matczak, Dean Sellis, and I had the opportunity to attend the Partnership With Patients Summit in Kansas City, Missouri the weekend of September 23rd where I found multiple cocktail tables populated by little Lego figures portraying The Walking Gallery. Close inspection revealed a miniature version of one of Regina’s painted stories applied to the back of each Lego character.

With painted jackets and coats or Lego dioramas, Regina Holliday continues to inspire others to take action on patients’ rights to their own health information. The Summit is about patients. I had the opportunity to listen in on various issues in healthcare – not as a pharmacist – but from the view of a patient.

Some of the discussions took me right back to my time as a student pharmacist, standing behind the counter listening to patients during medication consultations. There were times, in the pharmacy, that I was challenged to answer the patient because the scope of the question would require additional information from the patient’s medical profile. Frequently, it took more than a day to hear back from the doctor. The lag time may have been outside the doctor’s control, but it was clear to me that something would need to change.

Hearing Patient Stories

During the Summit, we had the opportunity to pitch an “un-conference,” an informal discussion where we focused on the patient “voice” in clinical trials. I was amazed with the dynamic interaction in the group and what we learned from this session.

We learned quite a bit about how important the patient experience is in clinical trials. I was horrified to hear what some patients were treated. In one example, because patients were not given a number to reach a clinical trial investigator, parents would reach out desperately to anyone they could for information. In this case, parents were calling a toy store just because the store made some toys given to children in the trial. The right lines of communication didn’t exist, and the patient’s (and their family’s) experience was poor.

One of the gentlemen we had the privilege to speak with, Scott Strange (@Strangely_T1), has depicted some of these stories in his blog, Strangely Diabetic. What I learned was that, regardless of their experiences, patients want to be involved with helping the progression of healthcare in all dimensions, including clinical development.

Through the lenses of these patients, I was further convinced that there is ample room for improvement as we seek to optimize the way healthcare is conducted. It is crucial that we tie all aspects of healthcare into a patient-centric focus and leverage feedback from the patients themselves.

Jerry Matczak, Regina Holliday, Gary Takher, and Dean Sellis

At the Partnership with Patients Summit, the Lego structures symbolized the connectedness of the Walking Gallery.  But it was the open, candid discussions that literally gave voices and hope to those who may have felt they were not connected at all.

Within our COI team, we hope to bridge the connectedness of patients with drug development, in order to share knowledge and optimize the ways we develop new and innovative medications.


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