Posts Tagged ‘liver’

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

April 5th, 2013

See Video:  Patient-Centered Drug Discovery in Liver Cancer

Help Me Spread the Word!  Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Today (April 5, 2013)  I am honored to present at the 3rd Annual CanLiv Research Symposium on Hepatobiliary Cancers, on the topic of “Putting Patients at the Center of Drug Discovery”. CanLiv is a vibrant and vital organization in the liver community, founded by Dr. Melanie B Thomas, Associate Professor, Associate Clinical Director of the Hollings Cancer Center and Grace E. DeWolff Professor of Medical Oncology at the Medical University of South Carolina, to support patients with liver cancer and catalyze new research.

Liver cancer or hepatocellular carcinoma (HCC) is the 5th most common cancer in the world and the 3rd leading cause of cancer death.  Unlike many other cancers in the U.S. liver cancer rates are rising. Yet there is only one FDA-approved medication for liver cancer, sorafenib (nexavar), although for some patients surgical or radiation therapies are appropriate. indicates that there are 741 liver cancer studies currently recruiting patients.  One of the largest limiting factors for finding additional treatment alternatives are the low number of liver cancer patients who are participating in clinical research. Only 3-4% of cancer patients and 1-2% of liver patients participate in clinical trials.

I’d like your help in transforming how patients are involved in clinical research. I want to see participation in clinical research, as agenda-setters, outcome-selectors, study-designers, as well as subjects, become the norm for patients in liver disease ( and all conditions!).  One of the new tools to help do this is Registries for All (Reg4All), , a novel patient-controlled online platform for sharing health information with researchers and each other developed by respected non-profit patient advocacy organization Genetic Alliance .  It has already won awards  and started to hit tech publications.

Most people think that registries are only for bridal or baby shower gifts, but registries, repositories for identified and de-identified health information, have the potential to accelerate the research process.

Reg4All is unique because:

¨  Permission to search, discover, access, use and share any data in the registry is 100% participant-controlled

¨  For all individuals – healthy and all conditions (most registries are siloed and of limited use to someone like me with multiple conditions)

¨  Entering information is fun, instead of tedious due to a gamified survey powered by Traitwise®

¨  Each participant controls his or her information through dynamic granular sharing settings – who, how, when and if data is shared thanks to PrivateAccess™ technology

¨  With the individual’s permission, this data is searchable by researchers in real-time through RecruitSource

Liver cancer, and liver research in general is in need of innovation.  My vision is that it can be transformed from the inside out by patients who are active partners in driving that innovation. Reg4All only realizes its potential if patients embrace it.

¨  Empowering  liver patients by valuing patient-generated health data

¨  Engaging liver patients by providing real-time feedback on comparison to others

¨  Entrusting patients with control over if, when, how, and with whom their health data is shared

¨  Representing the whole person rather than individual conditions and disease states (GI, Liver, Immune, Cancer, Biomarkers)

¨  Enriching and enlarging pool of patients to accelerate recruitment through community participation

¨  Reducing frustration and complexity of finding trials

Please help spread the word, particularly to patient advocates, liver and liver cancer patients.  Mention Reg4All in all of your communication vehicles Friday and moving forward.

Thank you!


Liver pts take control of your health data to speed health breakthroughs, B discovered 4 clinical trials. #Reg4All #CanLiv

Facebook/Online Communities:

Friday April 5th patients and family members living with liver disease are invited to try Registries for All (Reg4All) to share their health information, discover clinical research opportunities, and speed innovation in drug discovery for liver diseases.

Reg4All is unique in 2 ways:

1. It operates across all health and disease conditions. (So more likely to identify research opportunities from correlations between IBD, CF, liver disease, and liver cancers)


2. Each participant controls everything about their information– what they store, what if anything they share, with whom they share, for what purposes that information may be used– everything.





Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Speeding up the pace of innovation and new drug development is vital for individuals with liver disease.

Research seeks to discover safer, more effective, or easier to tolerate treatments and therapies – therapies that may improve prolong or save your life or patients like you.

Research can’t happen without patients willing to learn more about clinical studies and choosing to participate in studies that are right for them.

As a liver transplant survivor and the former president of the American Liver Foundation, I am excited to partner with Genetic Alliance, a national non-profit advocacy association, to promote a novel solution that makes finding and being found for a clinical trial easier — Registries for All (Reg4All).

If you or a loved one has liver cancer, cirrhosis, hepatitis, and other forms of liver disease, please explore Reg4All so we can all help each other.

Reg4All features TrialsFinder which provides a new, effective way to match individuals who are willing to participate in research with researchers looking for them.  Our top priority is helping you to find research projects that are useful you, making it easy for researchers to find you, while allowing you to control how, when, and if your information is shared.

Please join us in this by visiting

Next-Generation Non-Profits: Liver Edition

November 6th, 2012


I cannot believe that it has been months since I posted.  It has been a whirlwind since July 30th when I started as President & CEO of the American Liver Foundation.  I have traveled almost 15,000 miles learning and listening to staff and volunteers in our 16 chapters around the country so that I can do the best job possible on behalf of the 30 million people in the U.S. ( like me) affected by liver disease.  During one of those trips I also had the privilege of doing an Ignite presentation at the Stanford Medicine X Conference as an e-patient scholar.  Thank you, Stanford Medicine X planners, for inviting and integrating 35 e-patients rather than the customary 1 or 2 at most meetings.

Top of mind for me was and is, what does a Next-Generation Non-Profit look like?  How do you create one?  How do you transform a last-generation traditional non-profit into one?  Thank you to Sarah Krug, Executive Director of Cancer 101 and President of the Society for Participatory Medicine for sparking many of these discussions.

Since this was a tech-y, design type crowd I kept my slides to a single number and spoke from there. Next Generation Non-Profits in Numbers_cryer

Here are my numbers decoded.

10, 792 = Days since my initial diagnosis with ulcerative colitis. 10, 792 days ago I became a patient.

18 = years since my liver transplant.   I consider myself blessed to receive this gift of life.

16,036 = number of people on the waiting list for liver transplants.  Only about 6,000 people receive transplants each year.

100 = types of liver disease. Babies are born with genetic/metabolic disorders, teenagers can develop autoimmune conditions, the CDC recommends every Baby Boomer be tested for Hepatitis C

25,000,000 = people living with at least one chronic condition.  This is not a liver-specific quandry.

11, 473 = Twitter followers of @epatientDave ( on that date) — one  measure of online patient advocacy.   Note the large gap between the number of patients and the number of epatients.  I see opportunity there.

42 = Patient advocacy groups that meet the standards of the National Health Council, the umbrella group for traditional nonprofit organizations from the American Heart Association and the American Cancer Society, and a leader in policy around chronic disease and medical research

5 = minutes, less now, to make the argument that uniting the energy of epatients with the structure and reach of the traditional patient advocacy organization we can do a better job of creating patient-defined and patient-driven change in healthcare

36= The American Liver Foundation, my organization, is 36 years old. The oldest and largest patient advocacy organization in the liver space.

1 = I am the first patient to be CEO of the Foundation and one of the only patients to lead a major patient advocacy organization (Take a moment. Think about it.)

2= questions comprise the new strategic filter for everything we do as the Foundation — (1) does it solve a problem for a patient or a patient family?  (2) are we solving the problem in the most innovative and effective way possible?

20 = number of Board members I needed to convince that these were the right questions to be asking, the right direction to go in.  And just to explode any misconceptions that next-generation non-profits is about age, or even the sole province of patients, my biggest supporter has been practicing medicine as literally as long as I have been alive.  Next-generation non-profits are about impact.

8 = active partnerships between the Foundation and other associations

14 = pilots pending with academic medical institutions

3 = satellite sites for the patient-centered advocacy forum we held to get insights directly from patients to form the basis of our policy agenda

4 = government or quasi-governmental agencies ( pop quiz — name them in the comment section!) with new (past 2-3 years) patient/stakeholder engagement positions that we invited to the forum to interact with our patients

82 = corporate partnerships being pursued across sectors from food (fatty liver disease) to medical imaging to pharmaceutical

16 = chapters around the country, because at the end of the day it is about meeting individual needs, often face to face, or based on the specifics of the community

10, 792 = days from now I hope that there is no American Liver Foundation because we would have been so successful in eliminating liver disease.  My vision is that next-generation nonprofits are not about their own self-perpetuation, but about meeting their mission. I hope that 10, 792 days from now no one else’s little girl becomes a patient.



Launch of American Liver Foundation Innovation Council Today

June 8th, 2012

Good morning, Chicago!  Looks like a great day to start something new.

Today is the launch of the American Liver Foundation’s Innovation Council.  (@ALF_USA) Chaired by Dr. Danny Sands (@Dzsands) (@S4PM), Director of Healthcare Business Transformation at Cisco, and Dr. Nancy Reau, Assistant Professor of Medicine at the University of Chicago, the ALF Innovation Council is intended to bring together creative minds from across silos in healthcare to help us solve key problems facing liver disease patients and their families.

The program will also feature a panel of patients discussing their various experiences with liver disease and a presentation of the state of liver disease and treatment today.

If you are reading this blog post, it is likely that you have been unable to join us in person, but we’d still love your input.

Please comment on the four questions below or tweet us this afternoon (we start at 1pm CT) using the hashtag #ALF_IC.    Many thanks to the Innovator companies who are helping to spark our imaginations.

Step One: Detection/Diagnosis : Moderator Nancy Reau, MD

Key Issue/Question: How can we expand the number of patients in rural and underserved communities accurately diagnosed with liver disease?

Innovation Example: OraSure Rapid Test (rapid diagnostic test for HIV and HCV) @OraSureTech


Step Two: Newly Diagnosed/Treatment Selection: Moderator Danny Sands, MD

Key Issue/Question: How can we accelerate the understanding of a patient and their family of their diagnosed condition and how they are going to navigate an increasingly complex set of options?

Innovation Example: Inquisit Health (peer-to-peer web platform) @InquisitHealth


Step Three: In-Treatment: Moderator John Kontor, MD

Key Issue/Question: How can we optimize therapies by helping patients overcome barriers to adherence?

Innovation Example: Ginger io (smartphone/SMS/adherence and behavior feedback program)


Step Four: Survivorship: Donna Cryer, JD @DCpatient

Key Issue/Question: What are the best long term outcomes for liver patients and how do we achieve them?

Innovation Example: Galileo Analytics (data mining and visualization tool)