By Mara Feingold-Link, MD
The My Life, My Story (MLMS) program is a narrative medicine initiative originally developed at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin, in 2013. It involves a volunteer interviewing a patient about their life story, creating a 1,000-word document using the patient’s own words, and reading the narrative back to the patient for edits and approval. With their permission, the narrative is then added to the patient’s medical chart. As one could imagine, these stories are incredibly powerful. Patients often share about their dreams, their past successes and failures, trauma they have experienced, intimate details about their families and relationships, their fears, and what gives them joy. These narratives provide glimpses into the lives and experiences of patients, often offering critical social context for their medical conditions that providers would often not discover through standard medical interactions. Therefore, the final step in the process is the most crucial: The incorporation of these stories into patients’ medical charts offers all providers the chance to learn about the parts of their patients’ lives that are most meaningful to them. Due to its popularity with patients and providers, MLMS has spread to dozens of Veterans Affairs (VA) hospitals across the country. In recent years, the program has also been initiated in multiple non-VA hospital systems. I have been involved in the development of MLMS programs at three non-VA hospitals and one non-VA clinic in four separate medical systems.
Incorporation of a life narrative into a patient’s electronic health record (EHR) poses a unique challenge. Unlike the rest of a patient’s medical chart, MLMS narratives are written in first-person language using the patient’s own words. Not all patients pursue these narratives; participation in the program is completely optional. The document should be available between encounters. However, it is not as vital to immediate medical decisions as a code status or advanced directive documentation. It should also be clear when a provider opens a patient’s chart that a patient has had a story written; during the busy workday, providers are unlikely to search each patient’s chart for the possible inclusion of a life narrative when only a minority of patients have them.
In the VA’s EHR, Computerized Patient Record System (CPRS), there is a section titled “postings” that hold advanced directives and other documents between encounters. This postings section lives on the chart’s front page, and for many participating VA hospitals, the life narratives are uploaded to this section of CPRS under the title “My Story” or something similar. The EHR systems at non-VA hospitals do not always have an analogous area of the EHR to upload these stories, and these programs have had to find other ways of incorporating them.
At each site where I have helped initiate MLMS, the MLMS program leads met with a
single provider who was involved in health information and EHR functionality to explain the MLMS program, discuss options, and collaboratively formulate a plan. That provider then served as our liaison to the medical systems’ health information teams that built our MLMS EHR integration.
The first site I was involved in MLMS initiation was a multihospital academic system that used Epic for their EHR. The MLMS leads at that time were internal medicine residents, and we held multiple brainstorming sessions with our EHR liaison provider, an internal medicine chief resident. With signed consents from a handful of patients who had participated, we shared example narratives with the liaison, explained in detail the process for consenting a patient for the project and maintaining their privacy, and discussed options for incorporation into Epic.
We discussed the possibility of a progress note, but we recognized that this would be attached to a single encounter and would rarely be read by providers during future encounters. In fact, a pilot study showed that providers wanted patient life narratives in an area of the EHR that was more prominent than a progress note.1 We considered adding this narrative into the social history section of Epic, but we worried that providers would pull the entire 1,000-word narrative into their notes with social history templates. We also discussed the media tab, but we were concerned that providers would not think to search the (sometimes overwhelming) media tab without a prompt to do so.
We eventually decided on utilizing the “FYI” tab, an area of Epic that allows providers to write brief FYI notes about patients that show up as small flags on the home screen. Our EHR liaison presented this to the medical system’s Epic council at their monthly meeting. The Epic council wanted to see proof that stories were being completed and that more than one hospital in the system was participating. At the time, we had completed about 20 interviews and were in conversation with the internal medicine chief residents at another hospital in the system regarding expanding the program.
This was sufficient for the council, the initiative was approved, and a “My Life, My Story” FYI tab was created by our EHR liaison. The MLMS team started creating these tabs for consenting patients who participated in the program. Under the “My Life, My Story” flag, we were able to paste in the patient’s narrative. The whole process from initial brainstorming to going live took about 10 months.
Two other sites where I was involved in incorporation of MLMS into the EHR also used Epic, and the process was much simpler. We were able to provide the precedence of having successfully used the FYI tab at a previous site and could share Health Insurance Portability and Accountability Act (HIPAA)-compliant screenshot examples. At one of those two sites, also a multihospital system, the process from initial meetings to going live with the “My Life, My Story” FYI tab took about four weeks, and the EHR liaison was an internal medicine physician. At another site, the process took about four months of conversations until approval, including discussing a research project the MLMS team wanted to conduct at this site. At the time of this writing, the FYI tab has been approved at this site, but the health information team is awaiting Institutional Review Board approval for the research project before going live with the tab. The EHR liaison at this site is a nurse in the ambulatory department.
The final site, an outpatient clinic, uses eClinicalWorks. We discussed the precedent of using the FYI tab from Epic, and together we found the most analogous function in eClinicalWorks; we created a “global alert” indicating that the patient has had a story completed. The story itself is scanned and uploaded into the “patient documents” section of the EHR. The process of approval and going live took about two months, and our EHR liaison was a physician at the clinic.
Results and Next Steps
While patients clearly enjoy spending time speaking with volunteers, sharing about their lives, and being given copies of their stories, the true magic of this program occurs when those stories cross the barrier between patient and provider, in-person conversation and EHR. The incorporation of life narratives into the EHR is incredibly powerful. Research in the VA system has shown that providers believe reading these stories is a good use of their time and helps them provide better care to their patients.2 At one of our sites, a hematology team has learned about the injustices a woman with sickle cell disease has suffered at the hands of the medical system. At another, a renal team has learned that a young man took himself off the transplant list because he had lost his housing. And how these narratives are incorporated is hugely important; I have seen firsthand certified nursing assistants reading these stories on the medicine wards and physician assistants reading them in oncology clinic simply because they saw the alert in the EHR. While the MLMS teams at these sites have received extensive informal positive feedback from providers who read the stories, next steps will involve formally evaluating providers’ exposure to and feelings toward the inclusion of these narratives in the EHR.
Like with many grassroots projects, the key to implementing these MLMS programs has been finding champions to advocate for their success. For other non-VA programs looking to incorporate patient narratives into the EHR, we recommend finding an EHR liaison, a provider who is involved in the health information efforts of the clinical site, and working closely with them on next steps. Having example narratives, proof that people are participating in the program at your institution, and examples of incorporation into other EHRs, such as those provided here, are incredibly helpful. It is hard to overstate the impact that these stories can have on patients, families, and the providers who read them. Incorporating these narratives into the EHR is a big step toward humanizing the technology-heavy reality of modern medical care.
Mara Feingold-Link is a hospice and palliative care attending at Brown University.
- Roberts TJ, Ringler T, Krahn D, Ahearn E. The My Life, My Story Program: Sustained Impact of Veterans’ Personal Narratives on Healthcare Providers 5 Years After Implementation. Health Commun. 2021 Jun;36(7):829-836.
- Coats H, Meek PM, Schilling LM, Akard TF, Doorenbos AZ. “Connection”: The Integration of a Person-Centered Narrative Intervention into the Electronic Health Record: An Implementation Study. J Palliat Med. 2020 Jun;23(6):785-791.
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