Patient Perspectives

In this section you will find information about Tell Me More ® and other initiatives that highlight the important role patients — and their caregivers — play in their healthcare.

Do you know of a resource related to showcasing the experience of being a patient or caregiver of a patient? Please share a resource here.

Tell Me More®

The Gold Foundation’s Tell Me More® Program invites patients to help their healthcare team get to know them better. Tell Me More® is available for any care setting, including hospitals and clinics, through a Gold Foundation license. Tell Me More® can also be adapted for healthcare corporations to support their employees in creating strong and healthy connections with patients or customers, as well as their own colleagues. Find out more.

Tell Me More® at Northwell Health

This Gold Human InSight Webinar features Dr. Alice Fornari of Northwell Health, and Dr. Taranjeet Ahuja, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell who share their experience successfully implementing Tell Me More® at their institution, to benefit medical students, the healthcare team, and patients in powerful ways. Watch the video.

Institute for Patient- and Family-Centered Care (IPFCC)

IPFCC offers resources for patient and family leaders, clinicians, staff, administrators, educators of health professionals, researchers, and design professionals. They offer a variety of books, videos, reports, guidance materials and tools (both free and for purchase) to assist in efforts to move forward with patient- and family-centered care.

The Beryl Institute

The Beryl Institute is a global community of healthcare professionals and experience champions committed to transforming the human experience in healthcare. The Institute offers access to unbiased research and proven practices, networking and professional development opportunities and a safe, neutral space to exchange ideas and learn from others.

We are not visitors: Working together with family caregivers and care partners  is a guide for clinicians, care partners, policy makers, and researchers intended to help understand the experience of everyday people navigating the role of family caregiver or “care partner.” The guide includes a description of the core components of the caregiver experience and links to successful care partner-focused initiatives.

Humanizing Healthcare Through Art is a collection of art created by patients and families that expresses some aspect of their experience.

The Empathy Project

The Empathy Project is a series of photographic portraits with 2- to 3-minute long stories shared by patients of Howard Grill, a cardiologist and photographer, that highlights the joy that a healthcare worker can experience in taking the time to learn about patients as people. Learn more about it through this article.

Patient Portraits by Annie Levy

For 15 years, Annie Levy and her team of colleagues – photographers, videographers, graphic artists, and web designers – have been invited by prominent organizations to bring their skills to discovering and communicating the moments that tell the story of an organization, endeavor, or person. This work also involves equipping communities to tell their own stories through participatory communication. Visit her site to view patient portraits and learn more about these experiences.

The Negative Space

Allison Breininger has been a caregiver for her husband since he was diagnosed with Fanconi Anemia more than a decade ago. She has been by his side through a bone marrow transplant and multiple cancers and has experienced firsthand that caregivers are in the negative space: vital yet overlooked and unsupported. Fueled by what she has seen, Allison founded the nonprofit The Negative Space as a way to use her experience and skills to change the way caregivers are seen and supported.

Disability at Home

Disability at Home documents the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible — through images collected by Laura Mauldin, Associate Professor of Women’s, Gender and Sexuality Studies and Human Development and Family Sciences at the University of Connecticut, and colleagues. This site shows the profound competence and capability of disabled folks and caregivers, with the ultimate goal of making life easier for the millions of people across the US who are disabled and navigating an inaccessible world.

Patient Voices

Patient Voices is a series of stories from the New York Times that highlight a variety of patient perspectives relating to experiences with specific diseases.