The American Journal of Managed Care June 2016
Development of a Tethered Personal Health Record Framework for Early End-of-Life Discussions
Objectives: End-of-life planning, known as advance care planning (ACP), is associated with numerous positive outcomes, such as improved patient satisfaction with care and improved patient quality of life in terminal illness. However, patient-provider ACP conversations are rarely performed or documented due to a number of barriers, including time required, perceived lack of skill, and a limited number of resources. Use of tethered personal health records (PHRs) may help streamline ACP conversations and documentations for outpatient workflows. Our objective was to develop an ACP-PHR framework that would be for use in a primary care, outpatient setting.
Study Design: Qualitative content analysis of focus groups and cognitive interviews (participatory design).
Methods: A novel PHR-ACP tool was developed and tested using data and feedback collected from 4 patient focus groups (n = 13), 1 provider focus group (n = 4), and cognitive interviews (n = 22).
Results: Patient focus groups helped develop a focused, 4-question PHR communication tool. Cognitive interviews revealed that, while patients felt framework content and workflow were generally intuitive, minor changes to content and workflow would optimize the framework.
Conclusions: A focused framework for electronic ACP communication using a patient portal tethered to the PHR was developed. This framework may provide an efficient way to have ACP conversations in busy outpatient settings.
Am J Manag Care. 2016;22(6):412-418
- We used input from patients and providers to develop this framework for an outpatient primary care practice.
- Delivery requires cooperation among patients, physician, and support staff, but needs much less time than traditional office-based ACP conversations.
- Testing of the framework in different environments will be essential for dissemination and uptake.
For providers in a time-limited encounter in the primary care setting, ACP delivery may not be considered a priority over competing concerns.9 Additional barriers—such as a lack of training and resources, and prognostic uncertainty—have been reported by primary care providers.10,11 These barriers highlight the need for more accessible and time-efficient methods for recording patient ACP preferences in primary care12 that integrate nonphysician clinic providers into the communication process.13 However, a construct for providing efficient, team-based ACP delivery for outpatient practices is needed to help ensure its prioritization.
While validated tools for ACP facilitation exist, they require dedicated time and personnel for administration that are not feasible for many practices. Researchers have recognized the need for electronic tools that empower patients to engage in ACP,7,14-16 because currently, these stand-alone tools do not link documents to the patient’s electronic health record (EHR), aka personal health record (PHR). In order for providers to access documentation, the patient must provide it to them to file in the medical record. Therefore, 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 the medical record.
This innovative systems-level solution can achieve higher rates of ACP and AD completion. Investigation of such a solution remains imperative because of patient satisfaction, disease understanding, and the economic benefits of well-documented ACP.3-5
The framework was developed using a mixed methods approach over 2 phases: phase 1—initial framework development using review of literature and best practices in combination with focus group data to inform content; and phase 2—cognitive interviewing of patients to elicit feedback about the framework.
The original framework was established through review of best practices, and patient-desired content was derived from focus-group data. Common themes from delivery methods were summarized for focus-group participants. An interdisciplinary research team used focus-group feedback to inform development of the PHR-delivered ACP framework. The framework was presented during a focus group to all primary care providers practicing at the study site. Feedback about framework content and distribution was incorporated to create an initial draft of the PHR-delivered ACP framework. Additional primary-care patient participants (n = 22) were recruited to complete cognitive interviews. The research team used feedback from cognitive interviews to further revise the language and layout of the framework.
Focus Groups (phase 1)
Four patient-participant focus groups and 1 physician focus group were conducted to elicit preferences for a PHR-delivered ACP framework. These preferences were used to develop content, language, structure, and workflow for the framework. Four to 5 participants were recruited to each patient focus group based on best practice recommendations.17 Purposive sampling was used to ensure robust African American participant involvement. Such feedback was necessary because African American patients are half as likely as Caucasian patients to participate in ACP using existing models.18 All primary care providers at the clinical study site were recruited to participate in the physician focus group.
Phase 1: Patient Participant Focus Groups
Demographics. Nineteen participants were recruited for 4 different focus groups. Inclusion criteria were: a) current patient at study site, b) aged over 50 years, c) diagnosis of 1 or more chronic diseases, and d) taking 1 or more prescription medications. Inclusion criterion for physician focus group was: primary care provider at study site. Patient participant focus group demographics are summarized in Table 1. Of the 4 patient focus groups, 2 had Caucasian participants and 2 had African-American participants. Race-specific patient focus groups were conducted to ensure that opinions of African American participants were fully voiced without influence from Caucasian participants.19 Of the 19 subjects recruited, 6 were “no-shows” for their respective focus groups, leaving 13 total participants. Each focus group had between 2 and 4 participants due to “no-shows.” Of the participants, no subjects with less than a high school diploma consented to participate in the study. Six of the 13 participants reported having completed written ADs; no participants with a completed AD were African American.
Setting and content. All focus groups were facilitated by the same set of co-facilitators and were given/shown the same materials in order to inform discussion (eAppendix A [eAppendices are available at www.ajmc.com]). Educational information about ACP and PHRs were provided to participants at the beginning of the session. Participants were shown a brief video created by National Healthcare Decisions Day about ACP, and were given an informational brochure about MyChart, the institution’s tethered PHR, supported by the Epic EHR system. Educational materials, including a copy of the institution’s AD informational packet, were presented in binders that were distributed to each participant. The institutional AD packet contained an informational sheet about ADs, resources for discussing and developing ADs, and state-specific Health Care Power of Attorney and Living Will forms.
The binder also contained discussion questions and excerpts of ACP language employed in validated delivery systems.2,20,21 Sample questions were selected after review of the CDC’s summary document on ACP resources for the public.22 Discussions were initiated using a semi-structured format, each lasting approximately 60 minutes. One Caucasian participant in the first focus group was noted to be less vocal and participatory than others in the group.
Confidentiality, and the privacy of participants and content, were discussed prior to starting. The study team gave an introduction to ACP as a framework for conversation. Participants were subsequently asked about: a) personal experiences with end-of-life decisions and MyChart use, b) personal preferences on how their ACP plans should be communicated, c) willingness to use MyChart for ACP, and d) perceptions of sample ACP questions used in referenced validated face-to-face interventions (see Appendix A).2,20,21 The same questions were asked during each focus group. Discussion content was used to develop an initial PHR communication framework and workflow for provider feedback.
Phase 1: Physician Focus Group
Demographics. The physician focus group was recruited from the practicing physicians at the study site. All 4 physicians were approached, and all participated in the focus group. Demographic information about physician participants is summarized below (Table 2). The physicians at the study site were all younger than 45 years; they had been in practice between 3 and 11 years.
Setting and content. Physician focus group participants were asked about: a) clinical experiences with ACP, b) clinical experiences using PHR; c) barriers to ACP in practice, d) willingness to engage in ACP using PHR, and e) feedback about draft of framework and proposed workflow. Discussion was initiated using a semi-structured format and lasted approximately 45 minutes.
Phase 1: Data Collection and Analysis Methods (all focus groups)
Data were collected through audio recordings and observational notes taken during the focus groups. Recordings were transcribed using detailed transcription and were transcribed by the same trained transcriptionist. Study researchers decided on the format of detailed transcription prior to initiation because it captures not only verbal content, but also conversational features such as pauses, stuttering, and interruptions. Such factors were taken into consideration during the analysis of the focus groups to better understand the context of different comments. This form of transcription helps capture emotions, such as enthusiasm and discomfort, in addition to content.
Content Analysis Method was selected because it allowed assessment of consensus categories for framework development.23-27 Focused tape review of transcripts and field notes established narrative accuracy of data prior to analysis. Detailed transcripts were coded alongside field notes by 3 analysts. Each coded the transcript separately, and then compared results from the independent coding. To ensure confirmability and credibility of findings, focus group analysis was performed in 5 steps: 1) independent content category development; 2) independent identification of consensus categories; 3) development of a written template defining criteria for categories and subcategories (during a meeting among analysts); 4) initial assessment of inter-rater reliability; and 5) elimination of unreliable categories after discussion among raters.27 Themes found to be common among the coders were summarized and considered for framework development. Additional peer debriefing with 2 members of the research team helped ensure credibility of findings. Content and consensus categories informed initial framework question development (eAppendix A).
Cognitive Interviews (phase 2)
Following development of the framework, primary care patients were approached during clinical visits to participate in cognitive interviews. Cognitive interviews were conducted to receive “real-time” patient participant feedback about the framework, including the content, structure, and manner in which it would be received (ie, over MyChart).28 Patients aged 50 years or older were recruited to participate in 15-minute interviews during clinical sessions over a 6-week period. Demographics of cognitive interview participants are summarized in Table 3.