Rare disease patient in inspirational pose

PatientSight logo text

Providing life science organizations with a continuous connection to rare and specialty disease patient insights

ABOUT

Rare and Niche Specialty Patient Insights

Survey uncommon patient types when needed with our agile subscription service.

woman contemplating journey

PatientSight is a subscription-based platform providing the ability to obtain timely insights from surveys of rare and specialty disease patients of interest to your organization.

  • PatientSight is partnered with Rare Patient Voice, the premier rare disease patient panel provider.
  • Custom and syndicated research options- pick the package that suits your organization’s needs.
  • Cost-effective method for patient journey studies and ATU trackers.
  • The survey findings are displayed on a platform with dashboards and summaries.
  • We do the work, you see the results, including requests for custom cuts of the data.
  • Data is transmitted using a HIPAA compliant secure file sharing service.

Example Rare Disease Panels to Survey

Examples from over 1,500 US patient panels* available to survey as of 9-5-24

*from partner Rare Patient Voice; Ex-US panels also available.

Cystic Fibrosis patients
1,553
Hemophilia patients & caregivers
1,895
Hereditary Angioedema patients & caregivers
115
Myasthenia Gravis patients
832
Pulmonary Arterial Hypertension patients
1,044
Sickle Cell Disease patients & caregivers
1,384

VALUE

Flexible, Agile, Scalable

Choose the solution that is the ideal fit for you and your organization. Get insights on patient types of interest when needed.

Where do you want to go?

Follow the patient journey through disease, treatment, and brand experiences. Examine trends over time.

Patient and healthcare provider in discussion

Adapted to your Organization's Needs

Choose the patient type(s) of interest and custom or syndicated options.

Organizational meeting to discuss needs

Speed to Insights

With our subscription model, improve agility by deploying surveys when needed with little fuss.

Dashboard of survey findings

TEAM

Meet our leadership

We’re a dynamic group of individuals who are passionate about healthcare data and dedicated to delivering the best results for our clients.

  • Dave muggler picture for team section of patientsight website

    Dave is a healthcare industry veteran, having spent the past 20 years in life science market research and analytics. He has had Director roles with PDI, Syneos Health, and TGaS Advisors, a divison of Trinity. His work has spanned dozens of therapy areas, including many rare diseases. Dave has worked with clients that have managed products ranging from early-stage development to brand maturity.

    With a passion for helping to improve health outcomes, the idea for PatientSight applies a proven subscription survey model to patients and caregivers. "With so much attention on physicians as the center of the commercial universe in pharma, I wanted to develop a tool that tracks patient perspectives about their healthcare journeys.

    Dave and his family live in Yardley, PA. He is an avid sports, health, and fitness enthusiast.

  • Jason Fox team picture for PatientSight

    Jason brings over 20 years experience in escalating roles of responsibility in the health care and pharmaceutical spaces. These roles have included management and oversight of teams and processes related to data analytics, client service, and operations. He has held Director and VP roles at Verispan, inVentiv, and Syneos Health, running their syndicated market research business lines.

    Jason’s work has not only been focused on providing clients with quality data- it has also been about partnership and understanding client needs. He is excited about the opportunity that PatientSight has to become a trusted partner and source for companies developing and marketing products that benefit rare disease patients, who often lack effective treatments.

    Jason holds a BA from Dickinson College and an MPA from the University of Delaware. He lives with his family in Bucks County, PA and enjoys golf and various sports outside the office.

  • Wes Michael picture, partner with PatientSight

    Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions in research studies. This year the company celebrates its tenth anniversary. Rare Patient Voice has now conducted thousands of studies and rewarded patients and family caregivers with over $10 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust 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, Spain, Australia, and New Zealand.

    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.

    Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dogs Ace and Stanley.

  • Pam Cusick picture, partner with PatientSight

    Pam Cusick is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice’s mission and vision. She hopes to expand Rare Patient Voice’s panels to include all patients and caregivers who want to share their opinions and impact their disease category. Pam earned a BA in Psychology from Sweet Briar College, and a MA in Psychology from the New School for Social Research. She is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. As Senior Vice President, Pam’s focus is on the continued growth and success of RPV, with an eye on client services, business development, and oversight of patient outreach, panel management, and marketing.

FINDINGS

Example: Hemophilia

Dashboards are customizable and interactive (choose the filters you want to use)

Disease Severity

Nearly three-quarters of respondents state that they and their physicians rate their hemophilia condition as severe.

Disease Severity

Disease Severity

Treatment Decision

Patients & caregivers have quite significant involvement in treatment decisions.

Treatment Decision

Treatment Decision

Learning About New Treatments/Products

Hemophilia patients & caregivers most commonly learn about new treatments/products through conferences and online resources.

Learning About New Treatments/Products

Learning About New Treatments/Products

ARTICLES

News & Original Content

Read our articles

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