Patient Perspectives – CLL Society

Why the Patient’s Perspective is So Important Part 1:

Whom am I?

I was asked by friends to help with a campaign to ensure that the voice of informed patients be heard more loudly, more clearly and more often at large medical congresses such as ASH (American Society of Hematology) and ASCO (American Society of Clinical Oncology). To that end, I shot a series of five very short videos, starting with this one that introduces who I am and how I got involved in teaching my fellow patients and physicians about my disease, CLL and how patients approach their medical decisions.

Me in front of bleach painting by my son, Will Koffman

This video effort is directed at doctors, and is an important but smaller piece of my larger work that focuses on providing us patients with the best possible resources to educate and support ourselves in dealing with our largely incurable cancer.

Brian Koffman 2/26/15

Why Patients Need to Be Heard At Medical Congresses Part 2:

The Patient’s Perspective on CLL

This is the second part of a five part series on my take on the very specific topic on what the patients’ voices should be part of medical congresses.

But that is just the start.

Our voices must be heard not only at medical congresses, but also at the meetings between researchers and funders on how trials are set-up, at IRB (institutional review boards) that approve those trial designs and any subsequent revisions, by payers who decide what treatments get covered and what don’t, and of course in our doctors’ offices when we are planning our therapy using a shared decision making model.

Please listen to the first brief section monologue in the “Part 1” tab where I introduce myself if you haven’t already.

Here is the next segment where I discuss our concerns that are particular to CLL therapy.

Please let us know what you think. Do you agree with my take on how we weigh the adverse effects of chemo-immunotherapy?

Brian Koffman 2/26/15

Why Patients Need to Be Heard At Medical Congresses Part 3:

Patient’s Expectations

In tabs “Part 1” and “Part 2”, I discussed my evolution as a patient advocate and the importance of our perspective.

In Part 3, I discuss how our expectations as patients must inform how our providers talk with us. This awareness should lead to a different type of dialogue in the clinic, more balanced and interactive.

And that is what this website and my blog is all about.

Please let us know what you think.

Brian Koffman 2/16/15

Why Patients Need to Be Heard At Medical Congresses Part 4:

Shared Medical Decisions

In the fourth part of this five part series, I discuss the components of the shared medical decision.

Shared medical decision making is now a requirement in the patient/provider encounter in the USA under the Affordable Care Act. Increasing awareness of the mutuality of treatment choices is another critical reason for having patients speak at medical congresses.

Please let us know what you think.

Brian Koffman 2/26/15

Why Patients Need to Be Heard At Medical Congresses: Part 5:

My Experience Speaking as a Patient to Doctors

In the fifth and final segment, I share my experience and that of other patients who have had the privilege to speak to doctors and researchers at medical congresses.

To sum it up, it was been both enormously rewarding and well received.

I have to believe having patients on stage “telling it as it is” is making a positive difference in how providers approach their patients.