Why I Became Interested in Health Literacy

October 7, 2009 at 9:50 pm 11 comments

Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare.  

My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had questions.

There are many aspects of patient advocacy I could expand upon, but what struck me the most was how the couple would ask me on the drive home and even weeks later to repeat what the doctor had said. This was information that I retained but they did not. As I started to read about this, I discovered that studies had been done on the emotional impact of disease and how comprehension and retention were impacted.

While language and culture may had been factors, I believe fear had a stronger impact on this couple’s health literacy skills. Now, when I teach, I include health literacy, especially for its role in the design and evaluation of health Web sites. When someone goes to a health Web site, poor health literacy skills can influence the search terms used, the Web sites selected, and how information is used.

Entry filed under: health. Tags: , , , , , , .

Is There Time to Use the Internet Before Going to the ER? The Ephemeral Nature of Patient-Provider Consultations

11 Comments Add your own

  • 1. Tomotherapy  |  December 16, 2009 at 2:41 am

    Couldn’t agree more! It’s somewhat scary to think that so many people sit through appointments and don’t understand or remember what’s being said.

    The doctor is working for you! Be informed!

    Reply
  • […] I saw this first-hand as a patient advocate. Some of the responses, in comments and emails, to Why I Became Interested in Health Literacy, suggest ways of capturing a consultation with audio or video. There are clear advantages to this […]

    Reply
  • 3. Dom Gualtieri  |  October 20, 2009 at 12:19 am

    Mark:

    It is no secret that Corporate America is run by lawyers and bean counters. We are definitely a litigious society and because of it, it can work to our advantage.

    If such a device for audio recording a doctor’s conversation with a patient is implemented and I were a doctor; I would be up to date on my medications and on my diagnosis, etc. It would be a self-policing system that would keep everyone on his/her toes.

    However, my original suggestion was for patients (under stress waiting for the doctor) to be able to play back the medical terms spoken by doctors (some with strong accents) to liesurely play back the conversation and to store it. What is being suggested here is no different than a doctor reading his/her write-up and mailing it to the patient upon their request,

    The paper trail in existence now is supplemented with an audio recording.

    I am not very conversant (fortunately) on what takes place in surgery; but I assume there is a recording of the physician’s interaction with the staff (other doctors, anethesiologist, etc.)

    My suggestion gives immediate feedback. There would be less need for health care providers to request paper records with my suggestion. This might result in reduced staff and costs at the doctor’s office and hospital level. And that is a good thing.

    Reply
  • […] Why I Became Interested in Health Literacy « Lisa Neal Gualtieri lisaneal.wordpress.com/2009/10/07/health-literac – view page – cached Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic);… (Read more)Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare. (Read less) — From the page […]

    Reply
  • 5. Manny Hernandez  |  October 9, 2009 at 5:00 pm

    Dom,
    The idea of speaking on the spot and recording on to a CD is brilliant! Love it!

    I do feel cultural elements play a big role in how people approach health literacy. I dig into some of these elements in connection with Latinos in these two posts:
    http://www.dlife.com/dLife/do/ShowContent/daily_living/Viewpoints/manny_042208.html
    http://www.dlife.com/dLife/do/ShowContent/daily_living/Viewpoints/manny_051908.html

    Reply
  • 6. Dom Gualtieri  |  October 9, 2009 at 6:35 am

    Lisa:

    You hit the nail on the head with health literacy and especially the emotional state and its impact on the patient. Not all physicians and care providers are aware of how fast they speak and spout off medical terms and acronyms as if the patient graduated from med school.

    Simple Solution:

    How about speaking into a wireless lapel microphone which generates a Date/Time stamped CD as the patient checks out! Patient goes home and plays the CD liesurely and also has a record of the doctors instructions and diagnosis.

    Reply
    • 7. Dom Gualtieri  |  October 12, 2009 at 10:56 pm

      My wife, Marge, commented to me that a better idea would be for the patient to wear or have such a device which would be activated (date and time stamped) with the doctors knowledge and record the conversation. This way the doctor’s office wouldn’t need to incur any additional office transcription costs..

      Marge also commented that a patient could speak into such a device as she/he is enduring some medical change 24/7.

      This device would have a USB cale connection for those patients or individuals who would choose to track their ailments and the doctors conversations with them.

      NEW BUSINESS for somone.

      Reply
      • 8. Mark Notess  |  October 19, 2009 at 11:20 pm

        It would be important to understand how the knowledge that the conversation is being recorded would affect what the doctor would be willing to say, given the possibility of the recording showing up on the internet, being used in court, etc. When I think of how politicians and lawyers talk, I’m frightened at what would happen to doctors if we made their conversations, as opposed to their notes, part of a permanent record. Perhaps there could be an official statement at the end of the visit, like the writing down of a prescription, that gets recorded rather than recording the whole interchange?

  • 9. Me  |  October 8, 2009 at 7:32 pm

    Amen, Paul. The sad truth is that nothing much changes in health care in the U.S. until we get the payors behind it. Maybe I’m being a bit cynical — I haven’t had my coffee yet!

    Still, we know that improving health literacy and communication could reduce costs. We have to keep making a case for that cost savings. It might not be foremost in our hearts, but money is what speaks to payors, and to a large extent, providers as well.

    Lisa, your post is all too true! For many of us, that revelation came when a loved one was seriously ill or injured. When I had to help my mom fill out the same form about a dozen times in one day as she went from clinic to clinic within an academic medical center — and watched others struggling with their forms and trying to get questions answered — I said to myself, we can do much better than this. When I was pregnant and realized most of the handouts I’d been given were written at the 12th grade level or even higher, I wanted to rewrite them and hand them back.

    Health literacy and poor communications in health care are not precisely the same issue, but they go hand in hand. We will not improve one without improving the other. And we have to take into account the state of mind people are in when they have to take in this information and make decisions.

    Reply
  • 10. Paul Roemer  |  October 8, 2009 at 1:03 am

    Well written. I wish providers and payors had a similar interest. Imagine what they could proactively do with social media in this area.

    Reply
  • 11. Helen Osborne  |  October 8, 2009 at 12:37 am

    Thanks for sharing this story of why you became interested in health literacy. We look forward to learning more when your story is posted later this month on the stories page of the Health LIteracy Month website at http://www.healthliteracymonth.org

    Reply

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


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