Physicians’ Perspectives on HL7 Information Policy Sensitive Value Set: A Validation Study through Health Concept Categorization
Abstract
:1. Introduction
2. Methods
2.1. FHIR Patient Synthetic Data Access
2.2. Physician Recruitment
2.3. Sensitive Data Categories
2.4. First Survey
2.5. Second Survey
2.6. Data Analysis
3. Results
3.1. Demographics
3.2. Perceptions on HL7 Information Sensitive Data Categories
3.2.1. First Survey
3.2.2. Second Survey
3.3. Category Instability Comparison
4. Discussion
4.1. Recommendations for the Future Development of HL7 Information Sensitivity Policy Categories
- Involve physicians and incorporate their perspectives to ensure that the categories accurately reflect data sensitivity in clinical practice. In the first survey, physicians recommended significant revisions of the HL7 categories. The recommendations included adding 19 new categories (21.27% suggestions), relocating 7 categories (7.44% suggestions), removing or renaming 4 categories (5.31% suggestions), and revising 25 sensitive data definitions (65.95% suggestions).
- Incorporate patient-friendly language and inclusive terminology in the category names and definitions to empower patients to understand and make informed decisions about sharing their sensitive medical records. From the 94 comments that we received, we found that 22.34% of those included renaming sensitive data categories and definitions to make them more inclusive and patient friendly. Improving the readability and accessibility of the categories can enhance patients’ comprehension and engagement in their own healthcare. Incorporating plain language and considering cultural and linguistic diversity are essential steps toward achieving this goal [19,20]. Researchers and taxonomy developers should collaborate with patient advocacy groups and employ user-centered design approaches to ensure that the taxonomy is patient-centric and empowers individuals to participate in their care actively [21].
- Validate and refine the categories using real-world patient data, instead of hypothetical questions, to obtain more insightful outcomes. During the second survey, disagreements and partial agreements in participants’ data categorizations revealed differences in perspectives on health data. Some participants adopted a broad and context-driven perspective on data categorizations. For example, “Medication Reconciliation (procedure)” was categorized under “Medications”, “Closed fracture of hip” under “Violence” and “Diarrhea symptom (finding)” under “Infectious diseases”. Soni et al.’s study also reported that often, patients with behavioral health conditions adopted a context-based approach to categorize their own health data [1]. For instance, a patient categorized laxatives as “Mental health” information because laxatives were prescribed to address the side effects of their mental health medications.
- Assess the stability of categories to guide efforts to prioritize machine-interpretable sensitive data segmentation (e.g., Consent2Share and ONC LEAP-CDS [22]) efforts to enhance integration and interoperability. During the first survey, more than half of the participants (58.33%) indicated the need for additional categories. Understanding which categories are more stable will help to prioritize efforts to create machine-interpretable code sets to support electronic-based granular data sharing engines [23]. The “Diagnoses” class that was considered the most stable (1.35% out of 74 suggestions for change) in the first survey became the least stable (54.31% out of 232 disagreements) in the second survey. Some of the disagreements between “Diagnoses” and “Other” (e.g., “Alanine aminotransferase [Enzymatic activity/volume] in Serum or Plasma” was categorized as “Diagnoses” and “Other”) suggest the need for adding a new category, “Laboratory/Diagnostic test”. As a participant stated: “A consideration is to break diagnoses and diagnostic tests into separate categories, since there is a one-to-many relationship”.
4.2. Limitations
4.3. Future Work
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Proposed Categories for the First Survey | Modified Categories for the Second Survey |
---|---|
Behavioral health information
| Behavioral health
|
Demographic information
| Demographics |
Diagnosis information | Diagnoses |
Disabilities
| Disabilities
|
Drug information
| Medication
|
Genetic disease information
| Genetics
|
Infectious diseases
| Infectious diseases
|
Sexual and reproductive health
| Sexual and reproductive health
|
Social determinants of health
| Social determinants of health
|
Violence information
| Violence
|
Demographics | Freq. (%) |
---|---|
Age (years) | |
<30 | 5 (41.66%) |
31–40 | 3 (25.00%) |
41–50 | 1 (8.33%) |
51–60 | 2 (16.66%) |
>60 | 1 (8.33%) |
Gender | |
Male | 8 (66.66%) |
Female | 4 (33.33%) |
Years since graduation from medical school | |
<5 | 7 (58.33%) |
6–10 | 1 (8.33%) |
11–15 | 0 (0.00%) |
16–20 | 0 (0.00%) |
>20 | 4 (33.33%) |
Medical specialty | |
Internal Medicine | 3 (25.00%) |
Pediatrics | 2 (16.66%) |
Emergency Medicine | 1 (8.33%) |
Family Medicine | 1 (8.33%) |
General Physician | 1 (8.33%) |
Obstetrics and Gynecology | 1 (8.33%) |
Pathology | 1 (8.33%) |
Preventive Medicine | 1 (8.33%) |
Psychiatry | 1 (8.33%) |
Subspecialty | |
No Subspecialty | 9 (66.66%) |
Biomedical and Health Informatics | 1 (8.33%) |
Cancer Research | 1 (8.33%) |
Hematology-Oncology | 1 (8.33%) |
Categories | Relocate | Remove/ Rename | Redefine | ||
---|---|---|---|---|---|
Behavioral health | 1 | 3 | 15 | Count of | |
Demographics | 1 | 0 | 12 | Suggestions a | |
Diagnoses | 0 | 0 | 1 | Lower | |
Disabilities | 0 | 0 | 10 | ||
Drugs | 1 | 1 | 2 | ||
Genetic diseases | 0 | 0 | 3 | ||
Infectious diseases | 2 | 0 | 3 | ||
Sexual and reproductive health | 0 | 0 | 2 | ||
Social determinants of health | 2 | 1 | 6 | Higher | |
Violence | 0 | 0 | 8 |
1 | |||
---|---|---|---|
Category | Freq. of Comments | Participant Quotes (Inclusive and Patient-Friendly Comments are in Italics) | Changes Made to Categories |
Family medical history | 2 |
|
|
Behavioral health lifestyle factors | 1 |
|
|
Birth control history | 1 |
|
|
Bullying in school | 1 |
|
|
Childhood adversity | 1 |
|
|
Genomic information | 1 |
|
|
Gun violence | 1 |
|
|
Healthy diet | 1 |
|
|
Health risk factors | 1 |
|
|
HIPAA patient identifiers | 1 |
|
|
Human trafficking issues | 1 |
|
|
Laboratory and diagnostic tests | 1 |
|
|
Military combat traumas | 1 |
|
|
Personality disorders | 1 |
|
|
Place of employment and internet | 1 |
|
|
Psychiatry | 1 |
|
|
Physical impairment | 1 |
|
|
Social situations | 1 |
|
|
Substance abuse drugs | 1 |
|
|
2 | |||
Category | Freq. of comments | Quote (Inclusive and patient-friendly comments are in italics) | Changes made to Categories |
Drugs | 1 |
|
|
Gender and sexual orientation | 1 |
|
|
HIV/AIDS | 1 |
|
|
Living arrangements | 1 |
|
|
Marital status | 1 |
|
|
Psychiatric disorders | 1 |
|
|
Sexually transmitted diseases | 1 |
|
|
3 | |||
Category | Freq. of comments | Quote (Inclusive and patient-friendly comments are in italics) | Changes made to Categories |
Emotional disturbance | 2 |
|
|
Behavioral health | 1 |
|
|
Drugs | 1 |
|
|
Social determinants of health | 1 |
|
|
4 | |||
Category | Freq. of comments | Quote (Inclusive and patient-friendly comments are in italics) | Changes made to categories |
Sexual assault, abuse or domestic abuse | 5 |
|
|
| 4 |
|
|
Race | 4 |
|
|
Cognitive disability | 3 |
|
|
Danger to self or others | 3 |
|
|
Developmental disability | 3 |
|
|
Gender and sexual orientation | 3 |
|
|
Genetic disease | 3 |
|
|
Infectious disease | 3 |
|
|
Living arrangements | 3 |
|
|
Marital status | 3 |
|
|
Opioid use disorder | 3 |
|
|
Psychiatric disorder | 3 |
|
|
Social determinants of health | 3 |
|
|
Substance use disorder | 3 |
|
|
Drugs | 2 |
|
|
Psychotherapy notes | 2 |
|
|
Violence | 2 |
|
|
Diagnosis | 1 |
|
|
Mental health | 1 |
|
|
Military sexual trauma | 1 |
|
|
Patient location | 1 |
|
|
Pregnancy | 1 |
|
|
Religion | 1 |
|
|
Sexually transmitted diseases | 1 |
|
|
Category | Agree | Partially Agree | Disagree | ||
---|---|---|---|---|---|
Behavioral health | 2 | 14 | 6 | Count | |
Demographics | 8 | 8 | 12 | Lower | |
Diagnoses | 70 | 41 | 126 | ||
Disabilities | 2 | 3 | 3 | ||
Medications | 37 | 23 | 38 | ||
Genetics | 0 | 2 | 2 | ||
Infectious diseases | 0 | 14 | 10 | ||
Sexual and reproductive health | 5 | 12 | 2 | ||
Social determinants of health | 1 | 12 | 9 | ||
Violence | 0 | 1 | 1 | ||
Other | 94 | 19 | 23 | Higher |
Category Instability | ||||
---|---|---|---|---|
Categories | First Survey | Second Survey | ||
Behavioral health | 19 (25.67%) | 13 (4.24%) | Instability a | |
Demographics | 13 (17.56%) | 16 (5.22%) | Lower | |
Diagnoses | 1 (1.35%) | 146.5 (47.79%) | ||
Disabilities | 10 (13.51%) | 4.5 (1.46%) | ||
Drugs | 4 (5.40%) | 49.5 (16.15%) | ||
Genetic diseases | 3 (4.05%) | 3 (0.97%) | ||
Infectious diseases | 5 (6.75%) | 17 (5.50%) | ||
Sexual and reproductive health | 2 (2.70%) | 8 (2.60%) | ||
Social determinants of health | 9 (12.16%) | 15 (4.89%) | ||
Violence | 8 (10.81%) | 1.5 (0.48%) | ||
Other | 0 (0.00%) | 32.5 (10.60%) | Higher |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Eluru, M.; Mendoza, D.H.; Wong, A.; Jafari, M.; Todd, M.; Bayless, P.; Chern, D.; Eldredge, C.; Fonseca, R.; Franco-Fuquen, P.; et al. Physicians’ Perspectives on HL7 Information Policy Sensitive Value Set: A Validation Study through Health Concept Categorization. Healthcare 2023, 11, 2845. https://doi.org/10.3390/healthcare11212845
Eluru M, Mendoza DH, Wong A, Jafari M, Todd M, Bayless P, Chern D, Eldredge C, Fonseca R, Franco-Fuquen P, et al. Physicians’ Perspectives on HL7 Information Policy Sensitive Value Set: A Validation Study through Health Concept Categorization. Healthcare. 2023; 11(21):2845. https://doi.org/10.3390/healthcare11212845
Chicago/Turabian StyleEluru, Maheswari, Daniel Hector Mendoza, Audrey Wong, Mohammad Jafari, Michael Todd, Patricia Bayless, Darwyn Chern, Christina Eldredge, Rodrigo Fonseca, Pedro Franco-Fuquen, and et al. 2023. "Physicians’ Perspectives on HL7 Information Policy Sensitive Value Set: A Validation Study through Health Concept Categorization" Healthcare 11, no. 21: 2845. https://doi.org/10.3390/healthcare11212845