After registering to become part of The Research Loop, you will have an opportunity to fill out our Offering Feedback to Researchers form.  But you may be wondering what kind of feedback you can offer. 

Below is an example of feedback a patient or caregiver may offer and how it will be presented to the researcher.  Patients and caregivers submitting feedback need not be this detailed.  In fact, a simple – “this paper was great” and how it impacted you can be valuable information for researchers. 

Make sure to look at our Feedback Guidelines for tips on how to help improve your feedback and feel free to contact us if you have any questions.

Feedback for Dr. Brian Zikmund-Fisher

Graphics help patients distinguish between urgent and non-urgent deviations in laboratory test results.

[*The article for this example is open access and can be found here. You might take a moment to read it so you can understand the following feedback.]

 

Article Citation
Zikmund-Fisher, B.J., Scherer, A.M., Witteman, H.O., Solomon, J.B., Exe, N.L., Tarini, B.A., and Fagerlin, A. (2016). Graphics help patients distinguish between urgent and non-urgent deviations in laboratory test results. Journal of the American Medical Informatics Association, 24(3), 520-528.

Date the person read this article (may be best estimate)
5/23/2017

This person identifies as a:
Patient, Patient Advocate

This person is from:
United States

The reason person was interested in this study:

  • They were interested in the design and/or findings of this study
  • They were interested in the implications this research had for their care or the care of others they know

Overall impression of the study:
I really like this study.  As a patient, I know how hard it is to interpret test results from my doctor.  Having a colored line I think would be the most helpful to me.

Feedback on the study’s design:
I was glad to see that you had many people to sample from in this project so that you could get diverse views. I was wondering however if you would consider in future projects working with specific patient populations?  For instance, I would assume that cancer patients or patients with type 1 diabetes might have more experience with these areas and thus be able to provide feedback from their experience.

I did not like that you did not have a way for people to select that they might check online  or ask a friend about results before reaching out to their doctor.  I think many people will check online or ask a friend as an action that falls between doing nothing (and perhaps a lower urgency) and doing something (seeking out care). Since these patients are already online, one could assume that they might use online resources to put their findings in context.

Feedback on the study’s findings or conclusions:
I thought these findings were exactly what I would expect from the general public – that a colored line would be more helpful than a table.  In the discussion you talked about how hard it may be to determine the range and might select default display ranges. I think though that the tables already do this by indicating if a result is “Within Normal Limits” (WNL).  Perhaps you do not need to set endpoints as much as make sure there are clear markers for what is WNL.

Ideas for future research:
As I said above, I think it would be important to do a version of this study for patients who more frequently go to appointments – patients with chronic illness or with specific diseases like cancer.

How the person thinks the findings might impact patients or patient care:
I have seen this issue talked about with doctors and patients before – that the numbers and tables are hard to read and interpret. I think this will really help patients. However, it may be overwhelming if there are graphs like this for each result. Often I get maybe 20 results at a time and if I had to look at 20 graphs I might get confused or visually overwhelmed.

How the person thinks the findings might impact healthcare policy:
I think doctors and patients should push for this kind of information to be standard in all patient portals.  I also think in general there should be better patient education of what lab results may mean – perhaps better resources for finding information online.

General questions or feedback:
I was struck at the beginning of this article when you said that patients may “overreact to slightly elevated or reduced values.”  I think this is a very stigmatizing statement. Patients and caregivers do not “overreact” they simply react.  There has been a narrative in medicine for a long time that patients are incapable of determining what results mean.  In fact, I have found myself having to interpret the results on my own many times and pointing out problems to my doctors that they miss.  An article by Francesca Pillemer in PLoS ONE in 2016 talks about the potential releasing these results has to improve patient safety.  In my own experience, I know that my doctors may miss test results that may seem WNL but for me are abnormally high or low.  To say that I am “overreacting” is to dismiss my level of engagement and knowledge about my own care.

To that end, because I track my own results, I often compare my current results to past results.  As EHRs are used more, they may keep track of these differences and make comparisons as well.  How would a graph work that both shows where I am in comparison to WNL and in comparison to my own results?  It seems like a simple line graph may not work for that. 

I have seen a lot of tracking apps and I think the site Patients Like Me has experimented with graphing results. Have you worked with them or others to develop these ideas further?  I worry, just like EHRs, the type of graphs produced if different organizations create their own will mean patients have to learn new graphs each time we get results from a different doctor. We need a way to make this standard.