6th Annual Patients as Partners US Conference – Collaboration in Action

by Joe Ternullo

Patients as Partners conferences are the only conferences in the US and Europe dedicated to demonstrating how to systematically involve patients throughout the entire drug development life cycle. They aim to improve efficiency in clinical research and speed lifesaving, quality-of-life-improving therapies to those in need. Dr. Femida Gwadry-Sridhar and I recently returned from 6th annual Patients as Partners US conference in Philadelphia in March.

Collaboration and Efficiency Lead to Faster Treatments

Collaboration and efficiency are at the center of Pulse’s mission. That’s why it was so important for Pulse to participate in both conferences – our colleague, Dr. Tamara Howard presented at Patients as Partners EU. Networking is critical in the medical field to stay on top of the latest research, talk to a wide range of people, and exchange new ideas. At Patients as Partners,  we connected with patients, advocates, industry representatives, academic researchers, government officials, and non-profit organizations.

Patients as Partners US enjoyed a capacity, standing-room-only crowd. The collegial and engaging esprit de corps among all participants was apparent. Listening to one solid speaker after another, whose stories stayed with me, helped clarify that something was different—there was a bigger picture that everyone was aligned and working  towards—real progress was afoot.

A Few Highlights from Patients as Partners US

Judy Perkin’s Immunotherapy Trial: A Cancer Veteran’s Remarkable Story


  • Judy Perkins, Metastatic, Breast Cancer Veteran and Patient Advocate


Judy shared her remarkable 16-year journey battling breast cancer and the success that resulted upon enrolling in an immunotherapy clinical trial at the National Cancer Institute. Within six months of beginning immunotherapy, Judy had been cleared of all cancer. In fact, she’s the first person to be declared free of all metastatic cancer after a course of immunotherapy. Judy’s story was gripping, relevant and an inspirational patient engagement message. She is the first of many, many more to come.  The future is now.

Appraising Initiatives to Raise Public and Patient Awareness and Education


  • Ken Getz, MBA, Director and Associate Professor of Tufts Center for the Study of Drug Development and Founder and Board Chair of the Center for Information and Study on Clinical Research Participation


Ken reviewed global initiatives to educate the public and patients and to engage them as partners in the clinical research process. Ken highlighted  15 years of progress and educational excellence in this informative and comprehensive keynote address that ran the gamut of a broad cross section of educational programs and services, media outreach, awareness campaigns, and plain language clinical trial result summaries. This remarkable resource—at once pointing the way forwarding, making things happen, and catalouging results—is so essential to the advancement of the patients-as-partners movement.

FDA Patient Engagement Synergistic Efforts


  • Anindita Saha, Director of Clinical Expertise and Partnerships, FDA Center for Devices and Radiological Health
  • Michelle Tarver, MD, PhD, Director of Patient Science & Engagement, FDA Center for Devices and Radiological Health
  • Megan Moncur MS, Senior Advisor for the Science of Patient Input at the FDA Center for Biologics Evaluation and Research
  • Pujita Vaidya, Senior Advisor for Patient-Focused Drug Development Program and the FDA Office for the Center Director


This panel discussion focused on the FDA’s efforts to fully integrate the patient voice in all aspects of drug development. In summary, the FDA is systematically working to help ensure that patients’ experiences, perspectives, needs and priorities are captured and meaningfully incorporated into the development and evaluation of medical products throughout the medical product life cycle. These are committed and engaged people who are going to make it happen!

Do You Advocate for Patients? Work with Patients?

With its welcoming and committed community of interest and chock-full of high-value content, Patients as Partners is a must-attend event. Pulse Infoframe will return to Patients as Partners in 2020. Let’s not wait until then to talk. I will be at Clinical Research as a Care Option in Raleigh Durham in April. Femida and I will be at the Great Plains Rare Disease Conference in May. If you attend any of these events, look for us (or, better yet, email us). Let’s see how we can help you.

Joe Ternullo is the head of business development for Pulse Infoframe, a member of NQRN Advisory Committee and Co-Chair of the Society for Participatory Medicine

About Pulse Infoframe Inc.
Focusing on rare disease, cancer and patient reported outcomes, Pulse Infoframe, a new style health informatics company, delivers real-time analytics and visualization to improve outcomes, generate real-world evidence, and provide data insights and precision knowledge. Pulse aggregates data from multiple sources, making it available to relevant stakeholders and offering numerous benefits including dramatically improved efficiency, productivity, and collaboration. Pulse Infoframe is headquartered in Canada, with offices in the United States, and India.

More information is available at www.pulseinfoframe.com