Skip to content

Straight Talk on Clinical Trials

Patient Perspectives on Clinical Trial Participation

Wednesday, February 16th

12PM – 1PM EST

Sponsored by Informa Pharma Intelligence & Rare Patient Voice

Industry Professionals Review Key Takeaways from Over 900 Survey Respondents

In a friendly and live conversational format, panelists will discuss:

  • Gaining a deeper understanding of the patient journey
  • Discovering reasons for non-participation in clinical research
  • Gleaning insights from a recent survey of patients on their perceptions of clinical trials
  • Identifying ways sponsors, advocacy organizations and recruitment companies can refine the enrollment process

About the Panelists

The Blau Family

Mike Wenger
Informa Pharma Intelligence
Co-Moderator

weley michael

Wes Michael
Rare Patient Voice
Co-Moderator

steve jones

Steve Jones
EU-IPFF
Panelist

ashley smock

Ashley Smock
Panelist

sarah nechama frisch

Sarah Nechama Frisch
Panelist

To access more educational content about clinical trials and clinical research participation, click here.

Drugviu

Click on the resources listed below to download the full versions of Drugviu’s materials. 

Pandemic Response Network Flyer: English

Red de Respuesta a una Pandemia: Español

Peer Plus

Click on the resources listed below to download the full versions of these materials. 

Peer Plus: Mission and Capabilities

Latino Union of Chicago

Click on the resources listed below to download the full Latino Union of Chicago Annual Report. 

 

Advocate Aurora Health

Click on the resources listed below to download the full versions of Advocate’s materials. 

  • Dominantly Inherited Alzheimer’s Network Trial Unit 

Dominantly Inherited Alzheimer’s Disease Brochure
Expanded Registry Flyer (English)

Enfermedad de Alzheimer de herencia dominante
Expanded Registry Flyer (Spanish)

  • Clarity AD Clinical Study Information

Forgetting the Little Things
Concerned About Memory Loss?

   

Allergy & Asthma Network

Click on the resources listed below to download the full versions of the Allergy & Asthma Network’s materials. 
 

Institute for Population and Precision Health (IPPH)

Click on the resources listed below to download the full versions of IPPH’s materials. 
 

Einstein Healthcare Network

Click on the resources listed below to learn more about Einsteing Healthcare Network’s resources. 

TREND Community

Click on the resources listed below to download the full versions of the TREND Community’s materials. 

 

Community Voice Report July 2020: COVID-19 Positive

 

Community Voice Report August 2020: Pericarditis

Fox Chase Cancer Center - Temple Health

Click on the resources listed below to download the full versions of the Fox Chase Cancer Center’s materials. 
Be the Breakthrough: Understanding Clinical Trials

Allergy & Asthma Network

Click on the resources listed below to download the full versions of the Allergy & Asthma Network’s materials. 
 

Lung Cancer Initiative of North Carolina

Click on the resources listed below to view the full versions of LCI’s materials. 

Lung Cancer Risk Assessment Handout

PRA Health Sciences

Click on the resources listed below to view the full versions of PRA’s materials. 

Duke Health

Click on the resources listed below to view the full versions of Duke’s materials. 

Visit Discover Duke Research on Facebook

Download the handout below in English or Spanish

North Carolina Clinical Research

Visit North Carolina Clinical Research’s website 

Missy Hansen

Missy Hansen MSN, APRN, CPNP, CPHON, joined ICON in 2019 as a pediatric strategy liaison. She has 25+ years of experience as a pediatric nurse practitioner, including 17+ years in pediatric hematology/oncology at Children’s Minnesota, the largest hematology/oncology service line in the region, providing care for infants through young adults diagnosed with hematologic and/or oncology conditions. Ms. Hansen gained expertise working in inpatient, outpatient, and urgent care type settings. Ms. Hansen has in-depth experience working with the Children’s Oncology Group—the largest consortium with the most open pediatric studies around the world. She also has experience working with other consortia that conduct trials for pediatric to young adult patients.

Mike Wenger, Vice President of Patient Engagement, Informa Pharma Intelligence

Mike Wenger is Vice President of Patient Engagement for Informa Pharma Intelligence.

Wesley Michael, President, Rare Patient Voice

Wes Michael founded Rare Patient Voice in 2013 to give patients and caregivers with rare diseases the opportunity to voice their opinions in research studies. Rare Patient Voice has now conducted thousands of studies and rewarded patients and caregivers with over $8 million for their participation. Many have been recruited in person by Wes and his team at patient events like fund-raising walks and patient conferences, and through a referral program with patient advocacy and support groups. Rare Patient Voice now covers non-rare as well as rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, and Spain.

Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago.

Steve Jones, President, EU-IPFF

Steve Jones, is President of EU-IPFF, the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation and part of the Citeline Connect referral collective. EU-IPFF is dedicated to making clinical trials work better for patients in partnership with pharma and regulators in UK and Europe. Steve also is chair of trustees of the UK patient organization Action for Pulmonary Fibrosis and a council member for the European Lung Foundation. He also sits on the steering committees of four major non-pharma clinical trials funded by the UK’s National Institute of Health Research. Steve himself is a pulmonary fibrosis patient and had a lung transplant five years ago.

Ashley Smock

Ashley Smock is a woman living with ovarian cancer. She took part in the Rare Patient Voice/Informa survey on patients and clinical trial participation in 2021.

Sarah Nechama Frisch

Sarah Nechama Frisch is a woman living with narcolepsy with cataplexy. She took part in the Rare Patient Voice/Informa survey on patients and clinical trial participation in 2021.