Patients Telling Their Own Stories

“Window” photo by Nate Gibson

If you want to identify me,
ask me not where I live,
or what I like to eat,
or how I comb my hair,
but ask me what I am living for,
in detail,
ask me what I think is keeping me
from living fully
for the thing I want to live for.
~ Thomas Merton

As a patient waiting to see my health care provider,  I would adapt Merton’s template of personal revelation:

If you want to know who I am,
ask me not about my insurance plan,
or what is my current address,
or whether I have a POLST on file,
but ask me what I am most concerned about,
in detail,
ask me what I think is causing my symptoms
and what I think is keeping me
from eating healthy, exercising regularly, choosing moderation in all things
so that I can live fully
for the thing I want to live for.

As a physician in the midst of a busy clinic day, I struggle to know who my patients are beyond their standard medical history and demographics.  One of my goals in our primary care clinic, now almost a decade into electronic medical record keeping,  is to create a way for interested patients to provide their personal history online to us via our password secured web portal.   These are the questions our clinic staff may not have opportunity to ask or record during clinic visits.  Having the patient personally document their social history and background for us to have in the chart –in essence, telling us their story in their own words–can be very helpful diagnostically and for individualizing the best treatment approach for each unique individual.

We are creating an “About Me” folder in the electronic medical record that would contain information the patient would provide online via their secure patient portal.   It will be introduced once the patient signs onto their patient portal for the first time and views their online chart:

Tell us about yourself
This is your own personal history in your own words to be added to your electronic medical record in the folder “About Me”. You can edit and add information at any time via this secure patient portal to update it.

We want to know your story.  Only you can tell us what you think is most important for us as your health care providers to know about you.  We may not always have the time to ask and document these detailed questions in a brief clinic visit, so we are asking for your help.  

Why do we want to know your non-medical background as well as medical background?

We evaluate a patient’s symptoms of concern but we also are dedicated to helping our patients stay healthy life long.  To assist us in this effort, it is very helpful to know as much about you as possible, in addition to your past medical history.   It is crucial also to understand your family background and social history.  We want to know more about your personal goals, and what you think may be preventing you right now from living fully for the things you consider most important to you. 

This is your opportunity to tell us about yourself, with suggested questions below that you can consider answering.  This information is treated as a confidential part of your medical record, just like all information contained in your record.  You can add more at any time by returning to this site.

1)      Tell us about your family—who raised you and grew up with you, and who currently lives with you– including racial/ethnic/cultural heritage. If relevant,  tell us whether you have biological beginnings outside of your family (e.g. adopted, egg donation, surrogate pregnancy, artificial insemination, in vitro fertilization)    Provide information on any illnesses in your biologic family.

2)     List the states or countries you have lived in, and what countries outside the U.S. you have lived in longer than a month.  Have you served in the military or another government organization, like the Peace Corps?

3)      Tell us about your educational and job background. This could include your schooling or training history,  paid or volunteer work you’ve done.  What are your hobbies, how do you spend your leisure time, what are your passions and future goals.  Where do you see yourself in ten years?

4)      Tell us about your sexual orientation and/or gender preference.

5)      Tell us about your current emotional support system—who are you most likely to share with when things are going very well for you and especially when things are not going well.

6)      Tell us about your spiritual background,  whether you are part of a faith or religious community and if so, how it impacts your life.

7)       Tell us what worries you most about your health.

8)      What would you have done differently if you could change things in your life?  What are you most thankful for in your life?

9)      What else do you feel it is important for us to know about you?

Thank you for helping us get to know you better so we can provide medical care that best meets your unique needs.

As this effort is a work in progress, I’m interested in hearing feedback from patients and health care providers.  What additional questions would you want asked as part of personal history documentation in a medical record?

Electronic medical records allow us, as never before, the ability to share information securely between patients and their health care providers.
Patients want to tell us their story.  It is time we asked them.

4 thoughts on “Patients Telling Their Own Stories

  1. Innovative ~ and as a patient, I see a lot of advantages in this personalized approach. In California clinics (especially disadvantaged), for a number of reasons, it would be an extreme challenge. We see documentaries on this level of patient care and it is inspiring. Great to read this!


  2. one question that might help a doc to understand a person better is to ask what is the reason you are feeling so blue or down or are you depressed over anything
    as that can bring your health down…. as I see so many folks that are just barely hanging onto real life , due to some saddness they are carrying around and it is hurting their entire life …
    no one really wants to ask ,
    they don’t want to really know ,
    they always want to hear that a person is
    “just fine ”
    when you can see it in their eyes they are not just fine …
    I have a dear friend that feels like life is over for her … I am trying to help her hang on to get past the pain of her loss but it doesn’t help when everyone expects her to be fine by now …
    when I know personally that sometimes you never get past a loss you just have to learn to tuck away the saddness and move on , one minute at a time .
    I call to make sure she gets up out of bed and tries to at least sit on the porch and have a cup of coffee …losing two sons is making her turn into stone .
    I don’t know how to keep her spirit lifted
    but I try …
    as each day
    I ask … and listen and hope and send rays of sunshine even if it is only a phone call at least she knows I care …
    I know it is alot for a doctor to try to spend the time with a person but sometimes the heart is the most broken part on the body …


  3. I love this posting. So many people, with so many interesting, funny, sad, crazy, happy stories in their lives. To have someone interested in what they are really all about…it would create feelings that would fulfill both the health care provider and the patient.
    Life moves so fast now, and sometimes it really is best to stop and listen.
    I do believe the rural areas sometime suffer from lack of respect from larger providers. Shame on them. Rural life has it’s beauty and simplicity…and stories.


  4. Its commendable that you recognize that patients want to tell their stories and while your adaptation of Merton honours that, I find the questions you’ve developed only partially supporting your objective.
    The questions are more “history” than story. An authentic patient narrative is actually rarely prompted or formulated. What is missing from this equation is the physician’s capability to interpret the narrative.
    Its a theory embodied in the mission of the Columbia University School of Medicine Program in Narrative Medicine “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness. Through narrative training, the Program in Narrative Medicine helps doctors, nurses, social workers, and therapists to improve the effectiveness of care by developing the capacity for attention, reflection, representation, and affiliation with patients and colleagues.”

    Developing the skill to imaginatively enter into a patient’s narrative and understanding their story from their perspective will add meaning and improve practice. Appreciating the difference between “history” and “story” will advance your objectives, your understanding of your patients, and advance the quality and joy of your practice.

    Zal Press
    Committed to telling the challenging and unique stories of the patient experience.


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