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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Types of Research

At Rare Patient Voice, we connect patients and caregivers with opportunities to take part in several types of research. We always get their consent before sharing any data and we will never sell personal contact information.

RPV recruits patients and caregivers to take part in research including the following types:

Qualitative research is the process of gathering and analyzing personal experiences and opinions. Qualitative research studies may include:

  • Telephone Interview/Tele-depth Interview (TDI) - participants are asked to share their reactions, opinions, and attitudes over the telephone
  • Web-assisted Telephone Interview (WATI) - participants are asked to share their reactions, opinions, and attitudes using a platform such as Zoom, Skype, or Teams
  • In-person Interview (IDI) - participants are asked to share their reactions, opinions, and attitudes in-person
  • Ethnography (ETHNO) - a way of studying and learning about a person or group of people in their own environment
  • Focus groups - involve a small group of people with things in common (ages, attitudes, etc.) that takes part in a discussion of topics led by a moderator; focus groups can be done in-person or remotely
  • Journaling/homework - on paper or online, participants spend time each day describing their activities and how their medical condition impacts them
  • Online bulletin boards/online communities - participants log onto on online platform over the course of a few days or weeks to provide their input on specific topics
  • Usability/UX research - the interactions of participants (or “users”) are studied to help with the design of new products, medical devices, and experiences
  • In-home Use Test (IHUT) - participants test products at home and report back
  • Voice response - patients interact with a computer-operated phone system

Quantitative research is research based on statistics which is used to gather feedback on facts, opinions, and attitudes. Surveys and questionnaires are used most often to collect participant responses.

Clinical trials test medical, surgical, or behavioral approaches to disease. They are the main way that researchers find out if a new treatment, like a new drug or medical device, is safe and effective in people. A clinical trial can be used to learn if a new treatment is more effective or has less harmful side effects than the standard treatment. Other clinical trials test ways to find a disease early, while some test ways to prevent a health problem. A clinical trial may also look at how to make life better for people living with a life-threatening disease or a chronic health problem.

Real-World Data (RWD) and Health Economic Outcomes Research (HEOR) are related but different research approaches.

RWD focuses on patient health status and/or the delivery of health care collected from sources which can include:

  • Electronic health records (EHRs)
  • Claims and billing activities
  • Product and disease registries
  • Patient-generated data including in home-use settings
  • Data gathered from other sources that can provide information on health status, such as mobile devices

HEOR measures the link between treatment and actual outcomes and provides guidance on how to improve care. HEOR is used by pharmaceutical companies to understand how healthcare providers prescribe drugs and how these drugs are performing in the real world.

 

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Towson, Maryland 21286
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Rare Patient Voice, LLC, Market Research, Towson, MD

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