Topic: Introduction


I am new to this site but not new to the topic of Cholangiocarcinoma.  I have had the pleasure of meeting Marion Schwartz and working with her to integrate the 'voice of the patient' into the drug development process.  I will be attending the upcoming Stakeholder's Conference in Salt Lake City and am looking forward to meeting the many people who are so devoted to the mission of The Cholangiocarcinoma Foundation.

~ Donna

Re: Introduction

Donna...welcome to our site.  How nice it is to introduce yourself to our fantastic members.  You are a welcome addition to our board and I look forward to many more conversation with our global cholangiocarcinoma community at large.


Re: Introduction

Hi Donna,

I would like to add my welcome to Marion's.  I am sure you will be  a great asset to this board.   Looking forward to hearing more  from you in the future.


"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Introduction

Dear Donna, so very nice to meet you  and we are so happy to have you join the Conference in SLC. Welcome to our very special family and thank you for attending the Conference!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Introduction

Hi Donna,

I am glad you are now part of this forum. It may be my naivete but I have not heard 'voice of the patient' referenced before. Can you please clarify?

Thank you,

Re: Introduction

I would like to add my welcome. Thanks for your contribution to the foundation. I look forward to meeting you in Salt Lake City at the meeting.
Sara (Willow)


Re: Introduction

Hi Donna,

Welcome and thank for introducing yourself to us all, it's nice to meet you and I  look forward to hearing from you more. Thanks for joining the Board and for attending the upcoming conference as well.

My best wishes to you,


Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Introduction

Hi Donna, wanted to extend a warm welcome to you and welcome you to the group as well.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Introduction

Welcome, Donna!!

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Introduction

Thank you to all for the very warm welcome.  I am looking forward to meeting everyone at the Stakeholder's Conference tomorrow.

Carl – the concept of the “voice of the patient” is tied to a new model of “patient-centered” healthcare.

The patient is becoming the primary driver behind drug discovery and development, access to drugs, and healthcare policy. Patient input has begun to have a growing influence on the design of clinical trials, endpoints/outcomes, and weighing of benefit versus risk. Industry and regulatory agencies have begun to look for the best ways to engage patients in meaningful dialogue and optimize their input.

The goal is to put the patient at the center of the healthcare system.  This model helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community. Patient-centered care requires a systematic, deliberate and ongoing engagement of patients in dialogue about priorities, clinical investments, and therapeutic strategies.

To begin this conversation amongst the many stakeholders, I created the Drug Information Association (DIA) Patient Engagement Program to ensure that the 'voice of the patient' is heard globally in every facet of the discovery, development, and life-cycle management of pharmaceuticals, biotechnology, medical devices, and related healthcare products.  The program provides the tools needed to ensure that advocates improve their capacity to disseminate reliable, objective, comprehensive, and understandable information to their constituents. They learn how to raise awareness among industry, government, regulatory agencies, academia, and the scientific community about the importance of active involvement of “patient experts”. 

I met Marion Schwartz in 2012 when she participated in the DIA Patient Engagement Program.  I think that she will agree that the experience empowered, engaged, equipped and enabled her to better represent The Cholangiocarcinoma Foundation and the many people whose lives have been touched by this disease.  The ultimate goal is to give the patient a voice, to ensure the patient perspective is heard, and to provide vehicles for patients to convey their messages and offer their invaluable opinions while finally having a “seat at the table.”