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About Me, version 2.1 : a digital human-centered narrative for health care settings

This digital narrative, created by individuals and families, would give health system providers a profile of the "patient as a person"

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Who is your idea designed for and how does it reimagine the end-of-life experience?

The idea draws from an earlier Ideas post (https://challenges.openideo.com/challenge/end-of-life/ideas/get-to-know-me-2-0-digitally-personalizing-the-icu-experience-for-patients-families-and-providers), and is intended for individuals, families, and the health care providers who care for them.

Individuals facing serious illness, who may be near the end of life, are just like the rest of us.  They have personal stories, replete with meaningful experiences.  They have families, friends, and important others they've influenced and who have influenced them.  They have deeply-held values as well as sources of strength and meaning that may transcend their illness.  However, too frequently the health care system does not know about our personal stories, and/or they do not prioritize them even in situations where a person's narrative is critical to the health care decisions at hand. 


About Me, version 2.1 is a digital framework that brings individuals' personal stories into health care settings as a permanent, though modifiable and updateable, part of their health care record.  It could be completed through a human-centered tablet-based application that provides patients with questions that elicit their personal narrative, including questions about important developmental landmarks, family, meaningful life events, goals for their future, and feelings about mortality and other loss.  The format could also allow people to upload photos and videos, including a video version of an advance directive, if desired, as an added support for their designated surrogate decision maker(s).


Since current EMRs are highly variable in terms of ability to "push" external data and documents into them, I would imagine About Me being housed either as a scanned document in the advance planning section of certain EMRs (e.g. Epic) or possible within a cloud-based registry as currently occurs with POLST.  Eventually, I anticipate this could readily be pushed into any EMR, making it optimally accessible at the point of care.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

1. Review existing narrative history formats (e.g. dignity therapy interview, life review interviews, etc) to formulate the format for the narrative.
2. Test a pilot version of the format with a sample of seriously ill adults, including photo and video elements, and survey them and family members regarding acceptability, perceived usefulness, and practicality.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

1. Support with the digital user interface as well as the provider-facing interface.
2. Marketing and business strategy.

Tell us about your work experience:

I work a palliative care physician and have worked in palliative care program development, quality improvement, and health services research.

This idea emerged from

  • An Individual

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Dr. Rosenfelf,
I'm late to this IDEO page. I work as a hospice chaplain in the Bay Area-mostly from San Mateo to Los Altos. As part of my work, I have been using the Dignity Therapy model for about five years now, producing 1-2 hour videos of patients sharing their life stories. I do a bit of editing and present a rough cut for the patient's approval, and then burn DVD's for the patient to distribute as they see fit.
Recently, I have been experimenting with using a Mind Map program on my IPad, as I complete my initial assessment visit. I gather as much history as I can, and fill in more details later with input from the family and the EMR. I then generate a Mind Map-a visual representation of the hospice care plan, focusing on the needs and wishes of the patient and family. I have not shared these maps with the patient or family as of yet, but I refer to them as I continue to review the care plan. I am curious if you are still working on the About Me project. If so, would you be interested in discussing it further? Thanks much,
Rev. Chris Warner-Carey