Patients want to tell us their story

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 as follows:

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 current POLST,
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, shat 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.

Emily Gibson is a family physician who blogs at Barnstorming.

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  • http://www.facebook.com/profile.php?id=881580563 Kristy Sokoloski

    What an excellent article. One question though. Aren’t some of the questions that you listed that would go in the “About Me” section questions that already get asked on patient intake forms that new patients to your practice fill out? However, some of the others I am glad are ones to bring up and is a reason that a friend and I came up with a type of questionnaire that might help people have other important conversations with their doctors that they might not otherwise have. Thank you so much for writing this.

  • http://www.thehappymd.com/ Dike Drummond MD

    Great post Dr. Gibson … and a very important question. How can I get to know my patients to the depth I would like in the midst of a busy office day and the pressures of an EMR. A noble question and one worth asking over and over again. However, I believe what you are looking for is not a data dump of the details of their life. Having them write a thousand words in a medical record is just one more
    thing you don’t have time to read or organize in a way that it is
    something you can understand quickly.

    … you are looking for a connection at a deeper level than clinical symptoms and diagnoses. You are looking to “get them” in a way that “they get that you get them” … does that make sense?

    In my experience this is a process that has a very simple step at each visit. Ask just one non-clinical question at each visit and document their important answers in a specific area of the chart. Each time they come in this one question let’s them know you see them as something other than just a patient … and over time you build up that storehouse of the things “that make them tick” in the chart. And it is self adjusting because you learn the most about the people you see the most … who are usually the sicker ones where your knowledge and connection plays an even bigger role.

    It is a process … it takes time … and I can attest that it works very effectively — and even more important, it is FUN. You can play a game of “I wonder how many interesting facts I can learn about my patients today?” … like which one was a Korean War veteran trapped behind enemy lines for 37 days – one of my patients told me that whole story one day based on the one little question, “So you were in the military I see …”

    Keep up the great work … I can tell you are a good doc,

    Dike
    Dike Drummond MD
    http://www.thehappymd.com

  • HealthMessaging

    Emily,

    Great start! You are speaking to the essence of what it means to be “patient-centered,” understanding and where possible honoring the patient’s perspective.

    Here’s are some additions to your list of what patients want/need to share:

    - Beliefs about what’s wrong with me and why, i.e., it’s just a touch of sugar like Aunt Martha…and she lived to be 100.

    - Beliefs about medications – not everyone want to take a pill as the first course of tx.

    - Here’s what I want to discuss at today’s appointment

    - Here’s what I think is important – back pain vs. controlling A1C

    - I want you to understand I am on a fixed budget and have trouble paying for Rx

    - I live in a bad neighborhood and it isn’t safe to walk around the block

    - I don’t feel comfortable tell you I think you are wrong

    You don’t have to ask all these at every visit…but you do need to remember them from one visit to the next…otherwise don’t bother asking them. You can learn about these and 100 things docs should know about their patients at Mind the Gap blog…all about physician-patient communication.

    Good start. Good luck!

    Steve Wilkins
    http://www.healthecommunications.wordpress.com

    .

  • http://twitter.com/SueWintz Sue Wintz

    Excellent post, Dr. Gibson! As a professional chaplain affiliated with HealthCare Chaplaincy in New York, I can’t stress enough the importance of knowing a patient’s story as part of whole-person care. I can’t tell you the hundreds of times when, after reading my spiritual assessment or talking with a physician that I’ve heard “I didn’t know that; I’m so glad you talked to them.” Screening questions can open the door to physician/patient conversation that otherwise would not have happened. Having a board certified chaplain on staff, including clinics, would be a cost-efficient way to have a conversation with patients to complete an initial assessment and bring to the physician’s attention issues that would have impact on their care.

    A couple of additions I’d add to your list:

    How do you want information to be communicated about your health? To you directly? With a family member present? Does your culture have certain norms on how this information is shared? (Note: In some cultures, “bad news” is not given to the patient directly, but to family members.)

    Have you had recent losses in your life, such as death or serious illness of a loved one, death of a pet, job loss, etc?

    Are there spiritual, religious, or cultural practices that are important to you, particularly in regard to managing your health? (Note: in my experience, patients will not only answer with such things as prayer or meditation but also use of guided imagery, seeing a medicine man, etc)

  • sFord48

    I would guess it’s easier to spend time reading a patient profile and discussing such things when you are salaried by an institution that isn’t making a profit off their patients.

    I get 10 minutes with my doctor. Most of the time he isn’t familiar with my chart. I would rather have my doctor spend the time looking at my chart than some facebook type profile.

  • southerndoc1

    Great questions.
    Historically, these are issues that the patient and doc would discuss face-to-face over the course of several visits, and that’s what I still try to do in my practice. It’s a much more worthwhile use of the patient’s and my time than any MU activity.
    Having the patient take the time to type this info in, and then the doctor at some other time in the future (hopefully) reading it, isn’t really more efficient than just talking back and forth. I know you’re making an honest effort to improve things, but it’s truly pathetic what our medical system has become, isn’t it?

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    The patient doesn’t really need to type much because most of those questions (except #8 which is strange and #9 which is nice) are part of a typical Social History template in any EHR, and it comes with check boxes to make sure the data is structured and reportable (not sure how much confidentiality you can promise anymore).
    It’s fine to get the boxes out of the way, if it reduces the need to worry about the computer during the visit and allows folks to talk about stuff that has no boxes, like Dr. D’s Korea story, or some other boxless personal tale.

  • Jenny Bennett

    Illiterate patients or those with cognitive difficulties are excluded from the benefit of the questionnaire, which makes it a limited tool and a poor substitute for face-to-face conversation. It’s sad that it’s come to this but it’s better than nothing.

  • http://twitter.com/PatientCommando Patient Commando

    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
    http://www.patientcommando.com
    Committed to telling the challenging and unique stories of the patient experience.

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