Abstract
Background
Rather than identifying exposures and outcomes for research solely based on interests of medical professionals, there is a need for research that answers questions that are important to patients, so that they may make treatment decisions based on evidence that reflect their individual preferences.
Objective
To identify exposures and outcomes of interest that could be studied with electronic health record data from inpatient care.
Design, setting, participants
Mixed-methods analysis of semi-structured interviews administered in 2017 to 76 patients and 26 physicians who receive or provide care at Beth Israel Deaconess Medical Center in Boston, MA.
Measurements
After conducting detailed semi-structured interviews about topics of interest that can be studied using electronic health records of inpatient care, we used an inductive approach to identify themes about the health care experience.
Results
Participants reported concerns about adverse effects of medication changes, drug interactions, and surgery and other invasive procedures. The outcomes of greatest concern to them were in-hospital deaths and hospital-acquired infections. Participants commented on the importance of clear communication and information transfers, the hospital environment, accurate skills and knowledge, and upholding patient dignity and respect.
Conclusion
Engaging patients and physicians in the research development process provided insight to the exposures and outcomes they consider important. Our questions about exposures and outcomes of interest were restricted to topics that could be studied with electronic health record data from inpatient care, but using a similar approach to elicit feedback about the health care experience could be used to glean insight for other areas of future research.
Supplementary material
Semi-structured interview data collection form
Research topics
Based on today’s discussion, you will help us identify important research topics that can be studied in people who are hospitalized. We will ask you for guidance on the most meaningful way to report the results of these studies. This will allow us to help physicians and patients make informed decisions. Thank you for taking the time to participate in this study.
What questions do you have at this point?
We are aiming to think of exposures and how they may affect your risk of “adverse events.” An adverse event means “harm to a patient as a result of medical care.”Citation1 A report from the Inspector General stated more than 1 in 5 hospitalized patients experience an adverse event, of either permanent or temporary harm.
We have used this report to identify the leading causes of harmful hospital exposures and their complications. We are interested in hospital exposures that vary over time such as drugs or therapies that are taken every so often, surgeries, and other procedures. Further, we are interested in hospital complications that occur suddenly without warning such as a change in mental status, abnormally low blood sugar, inhaling materials into the lungs, and infections.
We will be asking you about the relationships between exposures and their potentially harmful results. An example of a relationship between exposures and their outcomes is the use of a catheter and developing an infection.
What questions do you have at this point?
The relationships that you identify will guide research priorities in future studies using information from patients hospitalized at Beth Israel Deaconess Medical Center. We will not be looking at your medical records and we will not ask you about your personal medical history. We are more interested in hearing your thoughts and suggestions and because of this, there are no right or wrong answers.
Do you have any questions before we begin?
We are hoping to identify different adverse events that patients may experience during a hospital stay. The underlying causes that lead to adverse events can result in permanent or temporary harm. What are possible causes of hospital harms and the effects they may have on one’s health in the hospital?
• Probe: Let’s think about some adverse events that might happen in the hospital
○ Follow up: What might a patient be exposed to for that complication to occur?
Probe: These may be issues that have affected you, someone you care about, or issues that you wonder about. What relationships between hospital exposures and outcomes are important to you, your family, or your colleagues/friends?
Redirect: If conversation is about slowly developing outcomes – Can you think of an example of events that happen suddenly without warning; something you might be able to observe within a hospital stay?
Close out: Based on our discussion, you recommended that researchers focus on the following harms and adverse events. Can you please rank this list from most to least importance to you?
On the other hand, can you help identify good things that might happen in a hospital setting?
Table S1 Exposures and outcomes during a hospital stay and ranking of perceived importance
Reference
- Office of the Inspector GeneralAdverse Events in Hospitals: National Incidence Among Medicare Beneficiaries. OEI-06-09-00090Washington, DCUS Department of Health and Human Services2010
Acknowledgments
We thank Stephanie Li (Decision Support Specialist, Beth Israel Deaconess Medical Center) and the InSIGHT Core in the Center for Health care Delivery Science at Beth Israel Deaconess Medical Center for their assistance in creating the list of potential study participants. This work was funded by a grant from the Patient-Centered Outcomes Research Institute (ME-1507-31028) and a KL2/Catalyst Medical Research Investigator Training award (an appointed KL2 award) from Harvard Catalyst | The Harvard Clinical and Translational Science Center (National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health Award KL2 TR001100). The content is solely the responsibility of the authors and does not necessarily represent the official views of Harvard Catalyst, Harvard University and its affiliated academic health care centers, or the Patient-Centered Outcomes Research Institute.
Disclosure
The authors report no conflicts of interest in this work.