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The American Journal of Managed Care July 2016
Enhanced Risk Prediction Model for Emergency Department Use and Hospitalizations in Patients in a Primary Care Medical Home
Paul Y. Takahashi, MD; Herbert C. Heien, MS; Lindsey R. Sangaralingham, MPH; Nilay D. Shah, PhD; and James M. Naessens, ScD
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Emily D. Doucette, MD; Joanne Salas, MPH; and Jeffrey F. Scherrer, PhD
Shared Medical Appointments: Balancing Efficiency With Patient Satisfaction and Outcomes
Shelly P. Smith, DNP, APRN-BC, and Beth L. Elias, PhD, MS
Changes in Premiums of Cancelled Nongroup Plans Under the Affordable Care Act
Jared Lane K. Maeda, PhD, MPH; Jersey Chen, MD, MPH; and Brent R. Plemons, BS
Economic and Clinical Impact of Routine Weekend Catheterization Services
Kirsten Hall Long, PhD; James P. Moriarty, MSc; Jeanine E. Ransom, BA; Ryan J. Lennon, MS; Verghese Mathew, MD; Rajiv Gulati, MD, PhD; Gurpreet S. Sandhu, MD, PhD; and Charanjit S. Rihal, MD, MBA
Hospital Participation in ACOs Associated With Other Value-Based Program Improvement
David Muhlestein, PhD, JD; Tianna Tu, BA; Katelyn de Lisle, BS; and Thomas Merrill, BA
A Restricted Look at CRC Screening: Not Considering Annual Stool Testing as an Option
Karen M. Kuntz, ScD; Ann G. Zauber, PhD; Amy B. Knudsen, PhD; Carolyn M. Rutter, PhD; Iris Lansdorp-Vogelaar, PhD; Barry M. Berger, MD FCAP; and Bernard Levin, MD, FACP
Impact of a Physician-Led Point of Care Medication Delivery System on Medication Adherence
Ana Palacio, MD, MPH; Jessica Chen, MD; Leonardo Tamariz, MD, MPH; Sylvia D. Garay, MD; Hua Li, PhD; and Olveen Carrasquillo, MD, MPH
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Testing of a Tethered Personal Health Record Framework for Early End-of-Life Discussions
Seuli Bose-Brill, MD; Matthew Kretovics, MPH; Taylor Ballenger, MD; Gabriella Modan, PhD; Albert Lai, PhD; Lindsay Belanger, MPH; Stephen Koesters, MD; Taylor Pressler-Vydra, MS; Christopher Holloman, PhD; and Celia Wills, PhD, RN

Testing of a Tethered Personal Health Record Framework for Early End-of-Life Discussions

Seuli Bose-Brill, MD; Matthew Kretovics, MPH; Taylor Ballenger, MD; Gabriella Modan, PhD; Albert Lai, PhD; Lindsay Belanger, MPH; Stephen Koesters, MD; Taylor Pressler-Vydra, MS; Christopher Holloman, PhD; and Celia Wills, PhD, RN
Pilot testing demonstrates the use of a novel, personal health record—based framework used in primary care settings may improve presence and quality of advance care planning documentation in the electronic health record.

Objectives: The process of planning for end-of life decisions, also known as advance care planning (ACP), is associated with numerous positive outcomes, including improved patient satisfaction with care and improved patient quality of life in terminal illness. In this study, we sought to test a novel personal health record (PHR)-delivered ACP framework through a small-scale randomized trial of usual care practices versus PHR-delivered ACP.

Study Design: Randomized controlled pilot intervention.

Methods: A novel PHR-ACP tool was tested using data and feedback collected in a randomized controlled pilot intervention (n = 50). Participants in the control group received standard care for ACP conversations while participants randomized to the intervention group received a novel ACP framework through the electronic health record.

Results: The pilot study testing the ACP framework found that its use resulted in improved ACP documentation rates (P = .001) and quality (P = .007) compared with usual care.

Conclusions: Tethered PHR use as an initial ACP communication tool can improve outpatient documentation rates and quality. Future studies obtaining patient feedback on a revised framework and testing in a larger setting are needed to determine reproducibility of findings.

Am J Manag Care. 2016;22(7):e258-e263
Take-Away Points
  • Advance care planning (ACP)—planning for future health decisions while still able to voice personal preferences—improves patient care, family satisfaction, and medical costs.
  • ACP is currently poorly delivered. We created a message system using patient portals to encourage physicians and patients to communicate about this topic.
  • ACP documentation frequency and quality were dramatically improved when using this electronic health record messaging workflow.
Advance care planning (ACP) is associated with a variety of favorable outcomes, such as improved patient satisfaction with care, improved patient quality of life in terminal illness, and better psychological outcomes of grieving family members after patient death.1-3 ACP is also associated with increased use of hospice, reduced intensive care unit use, and reduced costs for end-of-life care that patients do not necessarily want.3 However, rates of ACP and advance directives (ADs) completion remain persistently low (seldom >31%),4-6 even for patients with expected survival of less than 4 months.3

ACP delivery may not be considered a priority for care providers in a time-limited clinical encounter over more urgent competing concerns in the primary care setting.7 Additional barriers, such as a lack of ACP resources, lack of training in ACP conversations, and prognostic uncertainty in chronic disease have been reported by primary care providers, thus further complicating delivery.8,9 These barriers highlight the need for more accessible and time-efficient methods for recording patient ACP preferences in primary care. However, a construct for providing time-efficient, team-based ACP for busy outpatient primary care practices is needed to help ensure its prioritization. 

Researchers have recognized the need for electronic tools that empower patients to engage in ACP.5,10,11 However, these currently do not automatically link resulting documents to the patient’s electronic health record (EHR); in order for a patient’s medical providers to access this documentation, the patient must intentionally provide it to them to file in the medical record. Nonetheless, electronic support tools are a promising approach to translation of validated ACP tools for use in resource-constrained primary care settings, especially if such tools can automatically interface with patients' medical records.

ACP communication employing EHR-tethered personal health records (PHRs), which allow patients and providers to conduct secure electronic communication within the patient’s medical record, can help overcome many barriers that have not yet been addressed with current ACP delivery strategies12 (see Table 1 for definitions of relevant terms). A PHR-based ACP framework13 can provide a construct for team-based, outpatient ACP communication that is individualized, efficient, structured, and automatically interfaced with a patient’s medical record.14 Investigation of such a solution remains imperative because of patient satisfaction, disease understanding, and economic benefits of well documented ACP.1-3 Although the use of PHRs has been proposed as a novel way to streamline ACP, such a system has yet to be tested or developed into a workflow that would fit into the primary care model.14

This study was approved by the Ohio State University Institutional Review Board.

Study Overview

In this study, we sought to test a novel PHR-delivered ACP framework (eAppendix A [eAppendices available at]) through a small-scale randomized trial of usual care practices versus PHR-delivered ACP. Development of this framework has been previously described.15 Chart review was conducted pre-intervention and 6 weeks post intervention to examine the presence and quality of ACP documentation. The framework was tested using participants from an academic medical center primary care practice located in the Midwest—the same population used in previous studies exploring use of EHR technology in primary care settings.16

Framework Intervention

All patients 50 years or older who were seen at the clinic were eligible for participation. No prior experience with computers or the institution’s PHR (MyChart) was necessary, but patients were asked to complete MyChart registration upon their enrollment into the study if they had not already done so. Patients were approached for participation when they arrived for their clinical visits over a 3-month period. Patients who consented to participate in the study were then randomized into either a control or an intervention group. Those randomized to the intervention group received the developed PHR-ACP via their MyChart account; participants randomized to the control group received usual care (which included an institutional packet of information on ACP, state-issued documents about ADs, and encouragement to discuss any ACP questions with their provider).

Usual care practices reflected an established clinical workflow by general internal medicine practices (developed more than 3 years prior to study initiation in collaboration with social work and medical center leadership). Participant charts were reviewed at enrollment in order to collect descriptive information. Demographics are summarized in Table 2. Fifty total participants were enrolled in the pilot study, 31 of which were female. Forty-one participants were Caucasian, 5 were African American, 3 were identified as “other,” and 1 participant was identified as “unknown.” The mean age for all participants was 58.5 years, with an age range of 50 to 75 years. Two participants randomized to the intervention group did not complete the study (as outlined in the results section), and 9 patients who were approached refused to participate in the study.

Participants were followed during a 6-week study period. At the end of the study period, a second chart review was completed to assess whether or not ACP documentation had been created or updated since recruitment. The quality of any resulting ACP documentation was graded based on a 20-point scale, entitled “Criteria for Scoring Quality of ACP Documentation” (eAppendix B). This scale was developed by the research team after reviewing state of science ACP reports, such as those from the United Kingdom National Health Service, the Australian Quality Advance Care Planning Board, and the National Hospice and Palliative Care Organization’s “Caring Connections” program.17-19 Although this scoring system has not been validated, it has been based on nationally and internationally accepted ACP documentation components. Development of the scoring system was necessary in order to quantify the quality of documentation present in the patient health record. Consensus points between the reports were included in the scale. 

ACP Documentation

Two participants were removed from the data set; both participants had been randomized to the intervention group. The first participant was a 65-year-old Caucasian male who did not have ACP documentation at recruitment; he died 2 weeks after recruitment. Chart review revealed that he did not have any resultant ACP at the 6-week follow-up. The second participant was a 63-year-old Caucasian male who did not have ACP documentation at contact. He was removed because he did not activate MyChart immediately after enrollment, as required for the study, although he did activate it after he was called to be notified about his ineligibility for the study. This participant did have resultant ACP from the intervention (as determined by chart review at the 6-week follow-up); however, he was not included in the analysis because his workflow did not adhere strictly to the study protocol. EHR reviews of both the control (n = 25) and intervention (n = 23) groups were completed to determine the presence of any type of ACP documentation at enrollment, and then again after a 6-week study period.

Pre-intervention showed that no participants from either the control or the intervention group had meaningful ACP documentation present at baseline. After the 6-week study period, 1 individual from the control group had any-ACP documentation, while 10 members of the intervention group had ACP documentation present in their EHR (Table 3). A Fisher Exact test was used to determine the statistical significance of the observed changes in all types of ACP documentation after the intervention. The test resulted in a P value of .0011, indicating evidence of a relationship between the intervention and the likelihood of adding some type of ACP documentation (Table 3).

Participants in both the intervention and control groups varied in the type of ACP documentation present. Postintervention analysis was further divided into subcategories of documentation status to better understand the influence on the type of documentation elicited by the intervention: 1) no ACP documentation, 2) MyChart ACP documentation, and 3) non-MyChart ACP documentation (Table 4).

The odds of an individual in the intervention group adding non-MyChart ACP documentation were 13.07 of those of an individual in the control group. None of the covariates added to the model were found to have a significant impact on the likelihood of adding non-MyChart ACP documentation.

ACP Quality

This scale was developed based on completion of ACP communication in several iterations. Because the study focused on an initial or preparatory, step for ACP, it was hypothesized that quality scores would improve, but remain in the lower (below 5) range. The number of individuals with each of the 4 observed scores at follow,-up are presented in Table 5.  The scores were an accumulation of all ACP documentation in the chart, including documentation from past providers.

A Mann-Whitney nonparametric analysis was used to test for significant differences in ACP quality between the 2 groups from baseline to follow-up. The test returned a P value of .007, giving evidence that individuals in the intervention group exhibited a greater average increase in their quality scores compared with those in the control group.

Among individuals in the control group, no quality scores changed from enrollment to follow-up, meaning all 25 control participants had resulting quality scores of 0. Among the intervention group, we observed individual score increases of 1, 2, and 3 points, as well as 3 other individuals whose scores increased by 4 points each.

The ACP process holds several advantages for patients as they plan for future care and results in more favorable outcomes; nevertheless, despite these benefits, documentation remains low. Our framework allows for ACP documentation to be accessible by the individual and their medical team when it is needed most. Past research has highlighted the importance of ACP tools in clinical settings17,18 and the particular effectiveness of the ACP tools that allow patients to edit and voice their personal wishes electronically, at their own convenience.15 This newly developed framework serves as a clinical ACP tool, yet it retains the benefits of patient-initiated electronic ACP documentation.

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