OBJECTIVES:

To quantify and describe patient-generated health data.

METHODS:

This is a retrospective, single-center study of patients hospitalized in the pediatric cardiovascular ICU between February 1, 2020, and February 15, 2020. The number of data points generated over a 24-hour period per patient was collected from the electronic health record. Data were analyzed by type, and frontline provider exposure to data was extrapolated on the basis of patient-to-provider ratios.

RESULTS:

Thirty patients were eligible for inclusion. Nineteen were hospitalized after cardiac surgery, whereas 11 were medical patients. Patients generated an average of 1460 (SD 509) new data points daily, resulting in frontline providers being presented with an average of 4380 data points during a day shift (7:00 am to 7:00 pm). Overnight, because of a higher patient-to-provider ratio, frontline providers were exposed to an average of 16 060 data points. There was no difference in data generation between medical and surgical patients. Structured data accounted for >80% of the new data generated.

CONCLUSIONS:

Health care providers face significant generation of new data daily through the contemporary electronic health record, likely contributing to cognitive burden and putting them at risk for cognitive overload. This study represents the first attempt to quantify this volume in the pediatric setting. Most data generated are structured and amenable to data-optimization systems to mitigate the potential for cognitive overload and its deleterious effects on patient safety and health care provider well-being.

The synthesis of disparate data for holistic patient care is foundational in medicine. However, with the continual introduction of new technologies yielding new data, medicine is an increasingly quantitative domain. Ever more forms of data are generated, and clinicians must master different data delivery systems. More than a decade ago, the effort to digitize medical records held promise for a smarter age of medicine, but this transformation had unintended consequences.14  Dreams of integrated systems, collaboration via shared records, and allowing patient access to records have, at times, resulted in disillusionment, errors, and legal repercussions.58  For clinicians, patients have become deconstructed representations of their whole, particularly in the ICU.9  The electronic health record (EHR) was introduced, in part, to aid understanding of patients in the context of their diseases, but EHRs have putatively contributed to cognitive overload, generating voluminous data that often are never reviewed.10,11  We sought to understand the extent to which clinicians must process new data in the daily management of hospitalized patients in a tertiary pediatric cardiovascular ICU (PCICU).

We performed a retrospective, single-center, descriptive study in a tertiary PCICU. Patients admitted to PCICU for a minimum of 24 hours from February 1, 2020, to February 15, 2020, were included. Demographic features and surgical complexity by using the Society of Thoracic Surgeons–European Association for Cardiothoracic Surgery (STAT) mortality category, when appropriate, were recorded.12  New data elements from the EHR generated over each 24-hour period for each patient were collected. Partial PCICU days were not included.

Data elements were extracted from deidentified flowsheets (hemodynamics, vital signs, and respiratory data, including mechanical support, mechanical circulatory support, nursing documentation, and pharmacy), laboratory data, and clinical reports (radiology, echocardiography, and consult notes). Each flowsheet cell was considered. Generally, cells contained single data points (eg, pulse or mechanical ventilator rate); however, some contained multiple data points for which each element was counted as a single data point. For example, the systolic, diastolic, and mean arterial pressure were each counted, resulting in 3 data points per blood pressure measurement. Because of variability in clinical documentation, a blood pressure may or may not have been accompanied by documentation of where it was checked. When these data were available, they were included. Pharmacy data were extracted from flowsheets and included medication, dose, timing of administration, and rate of infusion when appropriate. Similarly, nursing documentation was extracted from flowsheets (eg, pain assessments). Although clinical reports consistently contain multiple data points and a summary analysis, each instance of a clinical report was treated as a single data point. Patient-reported symptoms, continuous physiologic waveform data, and telemetry data were not included. Generated data were compared to the typical PCICU provider workflow. The study was approved by the medical center Institutional Review Board.

From February 1, 2020, to February 15, 2020, 41 patients were admitted to the PCICU. Thirty patients (50% female) had at least 1 24-hour period in the PCICU and were included. Collectively, 126 24-hour periods were analyzed. Approximately 63% of patients underwent congenital heart surgery, with a median STAT score of 2 (interquartile range [IQR] 2–3), whereas the remainder were medical patients.

Patients generated an average of 1460 (SD 509) data points per 24-hour period. There was no difference between the amount of data generated by medical versus surgical patients (P =.24) (Table 1). Approximately half (51%) of data generated were hemodynamic monitoring, vital signs, and fluid balance documentation. Nearly 30% of generated data included a combination of nursing and respiratory data, whereas laboratory and imaging results accounted for 10% of data (Fig 1).

TABLE 1

Medical Versus Surgical Admission Characteristics

Medical Admissions (n = 11)Surgical Admissions (n = 19)Total Cohort (N = 30)
Median age (IQR), y 0.9 (0.14–14) 2 (0.16–9.5) 0.9 (0.16–14) 
Female sex, n 11 15 
Median wt (IQR), kg 8.19 (5.67–43.6) 11.5 (4.5–25.75) 9.01 (4.59–35.9) 
Median STAT mortality score (IQR) — 2 (2–3) — 
Hospital days studied 58 68 126 
Mean data points generated per day (SD) 1519 (552) 1408 (467) 1459 (509) 
Medical Admissions (n = 11)Surgical Admissions (n = 19)Total Cohort (N = 30)
Median age (IQR), y 0.9 (0.14–14) 2 (0.16–9.5) 0.9 (0.16–14) 
Female sex, n 11 15 
Median wt (IQR), kg 8.19 (5.67–43.6) 11.5 (4.5–25.75) 9.01 (4.59–35.9) 
Median STAT mortality score (IQR) — 2 (2–3) — 
Hospital days studied 58 68 126 
Mean data points generated per day (SD) 1519 (552) 1408 (467) 1459 (509) 

—, not applicable.

FIGURE 1

Pareto chart revealing relative contribution by percentage of each data type to the overall generated data clinicians face. Optimization of the first 4 contributors would address 80% of the daily data generation. RN, registered nurse.

FIGURE 1

Pareto chart revealing relative contribution by percentage of each data type to the overall generated data clinicians face. Optimization of the first 4 contributors would address 80% of the daily data generation. RN, registered nurse.

Close modal

Frontline providers typically cared for 3 patients (range 2–6) during the day shift (7:00 am to 7:00 pm) and 11 patients (range 8–13) overnight (7:00 pm to 7:00 am), resulting in average exposure to 4380 (range 2920–8760) and 16 060 (range 11 680–18 980) data points during day and night, respectively. PCICU attending physicians cared for 11 (range 8–13) patients during the day and 22 (range 16–26) patients overnight, resulting in exposure to 16 060 (range 11 680–18 980) and 32 120 (23 360–37 960) data points during day and night, respectively.

In this retrospective, descriptive study, we found that clinicians are presented with a significant amount of data through the EHR. The amount of data did not differ significantly between the types of patients, suggesting that most data are a byproduct of routine clinical care.

Clinicians are not quantitative by nature and operate in nonlinear workflows. Yet, with the fundamental transformation of clinical practice into a digital domain, capturing clinical data has been prioritized over interpreting clinical data. Our study supports the idea that clinicians’ abilities to cognitively process disparate data lakes are challenged by voluminous data generation, putting them at risk for cognitive overload. This risk is particularly acute for trainees.13  The acquisition of clinical decision-making skills relies on experiential heuristics to choose between relatively few options. The scaffoldings of such heuristics are developed through repetitive pattern recognition. However, the trend to capture increasing amounts of data threatens to dampen clinical patterns, potentially leaving trainees unable to distinguish pertinent signals from irrelevant or erroneous ones.1315 

Much of the cognitive work associated with data processing lies in interpretation or contextualization (filtering, trending, and alerting). Contextualizing data transforms it into information. Ackoff,16  a systems and management scientist, first described a hierarchy in which data optimization generates information, which subsequently generates knowledge and wisdom. This schema reveals a stepwise progression of increasing sophistication and utility. As a field, health care has not developed and widely deployed systems to transform raw data into information, instead requiring individual clinicians to perform this task. Our study reinforces the notion that clinicians are faced with the accumulating task of decoding meaningful information amid a significant amount of unfiltered data.

Much of these data and the risk they generate for cognitive burden existed before EHRs. However, the transition to an electronic platform (with purported benefits of up-to-date complete patient information, intersystem operability, and efficiency gains) was not associated with reductions in cognitive burden. Subsequent reports have revealed concerning divisions between patients and providers due to real-time charting, redundancy in data review, and clinical documentation with regulatory demands. Arguably, the EHR replicated previous challenges and generated new challenges.3,6  Patient dissatisfaction and physician burnout have been notable and persistent themes associated with the EHR, and there remains a desire to improve data management.

The solution is not to exclusively eliminate data but to optimize it and the systems by which it is delivered to clinicians. Over the past decade, there has been considerable interest in artificial intelligence (AI) as a means of leveraging EHR data for operational and clinical predictions. The health care system’s enthusiasm is partly based on the impact of AI on other industries. However, before implementation of contemporary AI solutions, those industries invested in data optimization.17  Optimization refers to systems and algorithms that convert data into actionable information for improved efficiency and effectiveness. Airlines use algorithms to create efficient flight schedules. Algorithms enable retail to identify cost-effective delivery routes. AI offered these industries productivity gains for problems in which optimization was already thoroughly exploited. That is, these industries had already taken the transformative step of contextualizing data into information. Lessons from these industries have revealed that similar investment in clinical data optimization is necessary before deployment of more sophisticated systems, including AI.

For health care, the journey to optimize data is a necessary first step in shifting the clinician’s cognitive task to more efficient knowledge generation. Such examples have already revealed value. Scoring systems, including automated early warning systems, amalgamate structured data into meaningful information related to patient decompensation risk.18,19  Algorithms integrating disparate data pools from pharmacies and laboratories are used to identify patients at risk for acute kidney injury.20  EHR-enabled checklists are associated with a reduction in resource use and health care costs.21  Dashboards designed to interact with EHRs to improve clinicians’ data display reduce prerounding time.22  These examples of data optimization hint at opportunities to employ AI to further transform information into more sophisticated prediction models.23  Following in the footsteps of other industries, hospitals must invest in technical foundations to optimize data into information. Subsequently, we can envision a future in which implementation of AI results in clinical precision and actionable predictions.

Our study is potentially limited by our inclusion of only patients in the PCICU, among the sickest and most closely monitored of patients. Patients in other settings may generate fewer data points. However, patient-to-provider ratios would also likely be higher, so providers might still face important cognitive burden related to data generation. Additionally, although our findings suggest EHR data contributes to cognitive burden, we did not measure cognitive overload specifically, nor did the project scope allow us to link data generation directly to provider experience or patient outcomes. However, our findings are consistent with previous reports in which it was found that EHR interactions by clinicians are associated with cognitive burden and burnout.3,710  Specifically studying the impact of data generation on clinician experience and patient outcomes would be an important future direction to consider.

Given the extent of demonstrable data generation in our study, we report a potential and important risk for cognitive overload for health care providers (particularly in ICUs). Our findings highlight a potential opportunity to improve data management within our health care system. Integrative systems and data optimization are requisite platforms for AI solutions to develop more informative EHR systems.

Dr Gal revised the data collection methodology, completed data collection and data analysis, and drafted, wrote, and revised the manuscript; Dr Han completed data collection and data analysis, contributed to manuscript drafting, and reviewed and revised the manuscript; Drs Longhurst and Scheinker provided substantial contribution to study conception, assisted with study design, analyzed the data, and critically reviewed and revised the manuscript; Dr Shin conceptualized and designed the study, supervised data collection, reviewed data analysis, and critically reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: No external funding.

1
Grams
R
.
The Obama EHR experiment
.
J Med Syst
.
2012
;
36
(
2
):
951
956
2
Kellermann
AL
,
Jones
SS
.
What it will take to achieve the as-yet-unfulfilled promises of health information technology
.
Health Aff (Millwood)
.
2013
;
32
(
1
):
63
68
3
Gawande
A
. Why doctors hate their computers. The New Yorker. November 12, 2018. Available at: https://www.newyorker.com/magazine/2018/11/12/why-doctors-hate-their-computers. Accessed May 19, 2020
4
Walsh
SH
.
The clinician’s perspective on electronic health records and how they can affect patient care
.
BMJ
.
2004
;
328
(
7449
):
1184
1187
5
Howe
JL
,
Adams
KT
,
Hettinger
AZ
,
Ratwani
RM
.
Electronic health record usability issues and potential contribution to patient harm
.
JAMA
.
2018
;
319
(
12
):
1276
1278
6
Schulte
F
,
Fry
E
. Death by 1,000 clicks: where electronic health records went wrong. 2019. Available at: https://khn.org/news/death-by-a-thousand-clicks/. Accessed May 19, 2020
7
Ash
JS
,
Berg
M
,
Coiera
E
.
Some unintended consequences of information technology in health care: the nature of patient care information system-related errors
.
J Am Med Inform Assoc
.
2004
;
11
(
2
):
104
112
8
Ash
JS
,
Sittig
DF
,
Dykstra
RH
,
Guappone
K
,
Carpenter
JD
,
Seshadri
V
.
Categorizing the unintended sociotechnical consequences of computerized provider order entry
.
Int J Med Inform
.
2007
;
76
(
suppl 1
):
S21
S27
9
Manor-Shulman
O
,
Beyene
J
,
Frndova
H
,
Parshuram
CS
.
Quantifying the volume of documented clinical information in critical illness
.
J Crit Care
.
2008
;
23
:
245
250
10
Downing
NL
,
Bates
DW
,
Longhurst
CA
.
Physician burnout in the electronic health record era: are we ignoring the real cause?
Ann Intern Med
.
2018
;
169
(
1
):
50
51
11
Pickering
BW
,
Gajic
O
,
Ahmed
A
,
Herasevich
V
,
Keegan
MT
.
Data utilization for medical decision making at the time of patient admission to ICU
.
Crit Care Med
.
2013
;
41
(
6
):
1502
1510
12
O’Brien
SM
,
Clarke
DR
,
Jacobs
JP
, et al
.
An empirically based tool for analyzing mortality associated with congenital heart surgery
.
J Thorac Cardiovasc Surg
.
2009
;
138
(
5
):
1139
1153
13
Tierney
MJ
,
Pageler
NM
,
Kahana
M
,
Pantaleoni
JL
,
Longhurst
CA
, et al
.
Medical education in the Electronic Medical Record (EMR) era: benefits, challenges, and future directions
.
Acad Med
.
2013
;
88
(
6
):
748
752
14
Melrose
JP
.
Clinician cognitive overload
.
Future Healthc J
.
2019
;
6
(
2
):
147
15
Harry
E
,
Pierce
RG
,
Kneeland
P
, et al
. Cognitive load and its impacts for health care. 2018. Available at: https://catalyst.nejm.org/doi/full/10.1056/CAT.18.0233. Accessed May 19, 2020
16
Ackoff
RL
.
From data to wisdom: presidential address to ISGSR, June 1988
.
J Appl Syst Anal
.
1989
;
16
:
3
9
17
Schmelzer
R
. The Achilles’ heel of AI. 2019. Available at: https://www.forbes.com/sites/cognitiveworld/2019/03/07/the-achilles-heel-of-ai/#79984ca87be7. Accessed August 7, 2020
18
Duncan
H
,
Hutchison
J
,
Parshuram
CS
.
The Pediatric Early Warning System score: a severity of illness score to predict urgent medical need in hospitalized children
.
J Crit Care
.
2006
;
21
(
3
):
271
278
19
Subbe
CP
,
Kruger
M
,
Rutherford
P
,
Gemmel
L
.
Validation of a modified Early Warning Score in medical admissions
.
QJM
.
2001
;
94
(
10
):
521
526
20
Goldstein
SL
,
Dahale
D
,
Kirkendall
ES
, et al
.
A prospective multi-center quality improvement initiative (NINJA) indicates a reduction in nephrotoxic acute kidney injury in hospitalized children
.
Kidney Int
.
2020
;
97
(
3
):
580
588
21
Algaze
CA
,
Wood
M
,
Pageler
NM
,
Sharek
PJ
,
Longhurst
CA
,
Shin
AY
.
Use of a checklist and clinical decision support tool reduces laboratory use and improves cost
.
Pediatrics
.
2016
;
137
(
1
):
e20143019
22
Pickering
BW
,
Dong
Y
,
Ahmed
A
, et al
.
The implementation of clinician designed, human-centered electronic medical record viewer in the intensive care unit: a pilot step-wedge cluster randomized trial
.
Int J Med Inform
.
2015
;
84
(
5
):
299
307
23
Tomašev
N
,
Glorot
X
,
Rae
JW
, et al
.
A clinically applicable approach to continuous prediction of future acute kidney injury
.
Nature
.
2019
;
572
(
7767
):
116
119

Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.