Frequently Asked Questions

  • Patient-engaged research involves patients and care partners as members of the team along with scientists and researchers. They assist researchers throughout the course of the study from choosing what is studied to deciding how to share the results of the study with others.

  • The time commitment varies depending on the needs of the research project. In some cases, it could be as little as one hour per month. You should work with the researcher to set expectations about the time commitment before you begin.

  • No education is required. Being a PF patient or care partner and openly sharing your ideas and experiences it the only requirement.

  • Besides being a PF patient or care partner, helpful skills include being comfortable talking in a group, a willingness to share honest feedback and ideas, and an eagerness to learn.

  • Responsibilities will vary depending on the needs of the research study. In many cases, patients and care partners help from the beginning of the study through to completion. You will likely need to participate in ongoing virtual and/or in person meetings and respond to phone or email correspondence. You will be asked to provide your opinions that are informed by your experience with PF. In some cases, you may be asked to learn about research, but training would be provided.

  • Individuals of all ages, genders, ethnicities, religions, and sexual orientations are celebrated and welcomed into patient-engaged research. Having a diverse group of patients and care partners is key to a study’s success.

  • When patients and care partners share their experiences living with or caring for someone with PF, studies are more likely to be meaningful and improve patients’ quality of life.

  • Patient-engaged studies can be initiated by researchers or by patients and care partners.

  • Yes, it is an approach to research and can be applied to many types of studies, including clinical trials.

  • To learn about new patient-engaged studies, you can:

    • Visit the Patient-Centered Outcomes Research Institute (PCORI) website at www.pcori.com/explore-our-portfolio/

    • [Enter “pulmonary fibrosis” in the keyword search and filter Status by “Ongoing” to see current research.]

    • Click HERE to complete our contact form on our project website.

  • Conducting effective patient-engaged research studies is complex and requires additional time and money. In addition, because PF is a rare disease, it is harder for researchers to identify and engage patients and care partners.

  • • Share your interest and ideas with your doctors and ask if they can connect you with individuals and organizations conducting research.

    • Talk with other PF patients and care partners about their research ideas, draft a letter with your ideas and signatures, and share with your doctors.

    • Contact advocacy organizations such as Pulmonary Fibrosis Foundation (PFF), Wescoe Foundation for Pulmonary Fibrosis (WFPF), and National Organization for Rare Diseases (NORD) and ask them to advocate for PF patient-engaged research.

  • • Be a research participant in a PF research study. A research participant is a patient or care partner who is recruited into a study and either has information collected from him/her or tests a medication or intervention.

    • Share your challenge, needs, and research ideas with your doctors.

    • Ask PF-related organizations and lung centers how you can help.

  • While it is possible, it is not ideal since being both a member of the research team and a study participant on the same study has the potential to bias study results.

  • Yes, a patient-engaged approach to research has been used to study a vast number of other illnesses including (but not limited to):

    • Various forms of cancer

    • Dementia

    • Stroke

  • To search current PF clinical trials, visit: www. clinicaltrials.gov.