Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care

Abstract

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners’ preparedness for the visit and opening a direct channel to express concerns about patients’ cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes’ and potential for future implementation and dissemination.

Keywords

family caregivers informal caregivers Alzheimer’s disease and related dementias

What this paper adds

• This study offers a novel approach to identifying dementia care partners at the point of care delivery, thereby filling a critical gap at the intersection of caregiving and clinical practice.

• Care partners’ perceptions of the portal-based intervention, adapted OurNotes, were overwhelmingly positive and affirmed the benefits of clarifying the identity of the portal user in the context of dementia care.

• Care partners’ recommendations for refining adapted OurNotes focused on expanding access to the portal among multiple care partners and enabling capabilities that allow users to update and edit their responses.

Applications of study findings

• The adapted OurNotes may be a proactive, non-invasive strategy for identifying dementia care partners in geriatric primary care.

• Care partners’ recommendations for refining adapted OurNotes should be considered to maximize the tool’s flexibility, utility, and uptake in diverse health care contexts.

Introduction

More than 6 million adults in the U.S. live with Alzheimer’s disease and related dementias, many of whom rely on assistance from an unpaid care partner (including relatives and friends) (Alzheimer’s Association, 2023). Care partners have significant roles in supporting the complex health needs of persons with dementia (Riffin et al., 2017; Sheehan et al., 2021). With progressive losses in cognition that result in communication challenges and decreased decision-making capacity, persons with dementia increasingly rely on care partners to perform disease-management tasks, facilitate care planning, act as joint or surrogate decision-makers, and communicate with clinical care teams about the patient’s medical history and treatments (Kasper et al., 2015). However, despite care partners’ contributions to dementia care planning, management, and coordination, they report significant challenges accessing relevant patient health information and obtaining adequate guidance from clinicians (Soong et al., 2020).

Consumer health information technology (CHIT) affords novel opportunities to formalize care partner identification, inclusion, and support in health care delivery. Electronic patient portals—online platforms that allow patients to view their electronic health record and interact with clinicians via direct messaging—hold unique promise. In the context of dementia, care partners commonly serve as the primary or sole portal user on behalf of the patient (Burgdorf et al., 2023). However, because portal access and communication typically occur through the log-in credentials (i.e., username and password) of the patient (Gleason et al., 2022), the identity of the user is often unknown to the clinician (Wolff et al., 2022). Aligned with the 2022 RAISE Family Caregiver Act’s goal of advancing care partner engagement within clinical care teams (Administration for Community Living, 2022), proactive identification of dementia care partners via their portal interactions may be a low-cost, scalable, and non-invasive strategy to encourage more inclusive, family-centered care while simultaneously protecting patient autonomy and privacy. Further, clarifying the identity of the portal user is consistent with patients’ desires and preferences for care partner access (Latulipe et al., 2018) and has the potential to support greater transparency and trust in clinical care interactions (Wolff et al., 2022).

OurNotes is a portal intervention that builds on federal legislation mandating patients’ timely access to their own health data by engaging patients and their care partners in the process of cogenerating visit notes (Office of the National Coordinator for Health Information Technology, 2022). With an emphasis on person-centered care and communication, OurNotes invites portal users to describe concerns or questions they would like to discuss during an upcoming appointment. Recent data indicate the acceptability of OurNotes to patients and clinicians and suggest its utility in helping patients to prepare for visit discussions (Walker et al., 2021). The OurNotes intervention represents a unique opportunity to identify care partners via their contributions to patients’ visit notes; however, structured fields that explicitly capture the identity of the portal user do not currently exist.

The absence of standardized mechanisms for clarifying who is authoring the message and their relationship to the patient may have important ramifications for patients’ care quality. For example, not knowing who is authoring portal messages may compromise accuracy of clinician interpretation of information, contextualizing its content, and setting appropriate visit agendas. Indeed, evidence from recent systematic reviews indicates that inadequate care partner identification and engagement can impede the delivery of person-centered care (Hodges et al., 2021) and interfere with triadic (clinician–patient–care partner) relationships that rely on trust and open communication (Tuijt et al., 2021). Such issues are particularly salient in the context of dementia where care partners are commonly involved in both electronic and in-person care delivery interactions (Gleason et al., 2023) and patients desire information sharing with family members or close friends (Zulman et al., 2011).

As part of a real-world implementation project, we adapted the OurNotes intervention by adding items designed to elicit (1) the identity of the person authoring the agenda-setting intervention and (2) his or her relationship to the patient. The adaptation was guided by Relational Coordination Theory, a systems-oriented framework for understanding the structural and relational dynamics that underlie effective work outcomes (Bolton et al., 2021). Relational coordination is a mutually reinforcing process that entails frequent, high-quality communication and relationship dynamics that are characterized by shared goals, mutual respect, and shared knowledge. Work structures including shared protocols, routines, and information systems (such as OurNotes) are viewed as fundamental to strengthening relational coordination among teams and groups, with the ultimate goals of overcoming siloed thinking, enhancing task integration, and maximizing outcomes related to quality and efficiency. Relational coordination is especially relevant to situations that involve uncertainty, time constraints, and multiple stakeholders and is directly applicable to the adapted OurNotes tool, which serves as an information-sharing intervention designed to support greater transparency and trust in clinical communication.

This paper presents findings from interviews with 15 care partners of persons with dementia about their experiences with the adapted OurNotes tool. Our primary goals were to understand care partners’ perceptions of the tool’s usability, benefits, challenges, and recommendations for future refinement.

Methods

Intervention Overview and Setting

The adapted OurNotes intervention was piloted at an academic geriatric primary care clinic in Colorado. Starting on May 1, 2022, patients with a portal account received a secure message to complete the OurNotes intervention prior to scheduled visits. Eligible care partners were recruited from August 2022 to March 2023, as detailed below. The original OurNotes tool includes a general health inquiry (“How have you been since your last visit?”), followed by the prompt “What are the top 3 questions you would like to ask at your visit?” with separate text boxes. The adapted OurNotes tool included a new question: “Which of these applies to you?” Response options were (a) I am the patient; (b) I am the patient and someone is helping me; and (c) I am not the patient. When “I am not the patient” was selected, branched questions were asked, “What is your name?” and “What is your relationship to the patient?” Options of “adult child, spouse/partner, other” were available to the user. Responses are saved in the electronic medical record and can populate into clinical documentation for clinicians to review before or during the patient’s visit.

Figure 1 depicts the adapted OurNotes intervention with the self-identification question (left panel; shaded blue) and original agenda setting questions (right panel; shaded yellow).

Participant Eligibility and Recruitment

Care partners were eligible to participate in the interview if they supported a patient with dementia (i.e., determined through chart review including medical durable power of attorney [MDPOA], emergency contact, and/or individual commonly documented as present at patient appointments), were fluent in English, and had completed the adapted OurNotes tool within the past 6 months. Convenience sampling methods were used to identify care partners who completed the adapted OurNotes on behalf of the patient through (a) referral to the study team by clinic staff, including staff members of an embedded dementia care partner support program (Schara et al., 2022), and (b) chart review of patients identified through the health system’s dementia algorithm (Ernecoff et al., 2018) (algorithm adapted to include all stages of dementia), who have a patient portal account, and where the adapted OurNotes tool was completed by someone other than the patient. Research team members contacted the person who was named as completing adapted OurNotes by email or phone, when the contact information was available, to invite their participation.

In total, 22 care partners were approached to participate in the semi-structured interview. Of those, 15 agreed and completed the interview; the rest (n = 7) declined to participate or did not respond to outreach attempts. All participants received $25 for their participation. The study was determined to be exempt from review by the Colorado Multiple Institutional Review Board (COMIRB). No participants had a prior relationship with the study team.

Interview Guide

The interview guide encompassed three sections designed to elicit care partners’ experiences with and perceptions of (1) the OurNotes tool overall, (2) the new self-identifying questions featured in the adapted OurNotes, and (3) portal messages with clinicians via the patient portal and proxy accounts. Following implementation science and user-centered design principles that focus on the user’s experience and iterative design (Czaja et al., 2019; Pearson et al., 2020), care partners were asked to describe how they used the adapted OurNotes; elaborate on its utility, benefits, and drawbacks; and provide recommendations for refinement to better support their own needs and those of the care recipients (see Supplemental Appendix A for Interview Guide). Demographic information (e.g., age [in deciles], gender, race, ethnicity, education level, geographic location [urban, rural, or frontier county], and relationship to patient) was collected at the conclusion of the interview and entered into REDCap by the interviewer (Harris et al., 2009).

Data Collection

Interviews were conducted by two investigators with backgrounds in social science and medicine. Interviews were conducted via telephone (n = 13) or Zoom (n = 2), according to the care partner’s preference. Prior to audio recording, participants provided verbal informed consent. Interviews lasted 30–40 minutes. All interviews were audio recorded, professionally transcribed, and de-identified prior to analysis.

Data Analysis

Data were analyzed according to Clark and Braun's (2012) methods of thematic analysis, which was selected for its structured approach to identifying patterns and organizing themes across the data set (Clarke & Braun, 2012).

To support the present study, data specific to the adapted OurNotes tool were extracted from each transcript. Guided by prior literature on care partner engagement in clinical care processes (Parmar et al., 2021), a set of a priori codes were initially generated by the study team. The transcripts were then independently reviewed by three investigators with backgrounds in nursing, social work, and psychology (J.M.S., J.C., and C.R.). The investigators first familiarized themselves with the data through close examination of the transcripts. After multiple readings, additional codes and associated definitions were generated and documented in the preliminary codebook. Each investigator independently coded transcripts according to the preliminary codebook, applying the codes to small segments of text. The team members also employed in vivo coding in which codes emerged directly from the data and were integrated into the codebook.

Once all the transcripts had been coded according to the preliminary codebook and incorporated relevant in vivo codes, the analytic team convened to compare their codes, resolve disagreements, and achieve consensus on the coded excerpts. The codebook was iteratively revised as part of this process: new codes were added; codes with similar properties were merged; and other codes were renamed to better reflect their conceptual underpinnings. The final codebook was composed of 9 high level codes and 44 sub-codes (see Supplemental Appendix B for Codebook). The final agreed upon set of codes were applied to all transcripts by two members of the analytic team (J.M.S. and J.C.) who met to reconcile differences and confirm the application of codes—a process known as investigator triangulation. Finally, as part of the theme searching and defining process, the investigators examined the data for patterns, using data visualization tools to identify deviant cases and evaluate common clustering of codes. Codes with similar properties or underlying meaning were collapsed into broader categories and higher-order themes, which were defined based on their underlying “essence.” Patton’s (1990) dual criteria for judging categories and themes (internal homogeneity and external heterogeneity) were applied to determine the quality of each theme and its coherence. The final set of themes was mapped back onto the coded excerpts and full dataset to ensure accuracy, quality, and sufficiency of data. ATLAS.ti web (version 5.16.0) was used to facilitate data coding, organization, and management (ATLAS.Ti, 2023).

Efforts to increase trustworthiness in the study findings followed Lincoln and Guba’s (1991) Four Dimension criteria. Specific strategies included (1) analytic memos generated by interviewers upon completion of each interview (confirmability through reflexivity), (2) creation and use of a structured codebook by the analytic team whose expertise spanned nursing, social work, and psychology (credibility), and (3) audit trails documenting key analytic decisions made by the study team (dependability). In addition, the team routinely shared de-identified transcript excerpts and themes with a working group affiliated with the Coalition for Care Partners to identify potential bias, gain additional insights, and to triangulate findings (confirmability; transferability) (Coalition for Care Partners, 2023). Data included in this analysis are available by request.

Results

Sample Characteristics

Of 15 care partners of persons with dementia who were interviewed, a majority identified as White (n = 14) and non-Hispanic (n = 13). Most were aged 60–69 years (n = 8), identified as female (n = 13), lived in urban or suburban communities (n = 11), and did not live with their care recipient (n = 10). Care partners were well-educated, having completed at least some college (n = 5), received a college degree (n = 5), or a postgraduate degree (n = 5) (Table 1). Alphabetic labels were given to the participants to protect their identity.

Table 1.

Care Partner Characteristics (N = 15).

	N	%
Age
40–49	1	6.7
50–59	2	13.3
60–69	8	53.3
70–79	3	20.0
Prefer not to answer	1	6.7
Gender
Female	13	86.7
Male	2	13.3
Race
White	14	93.3
Multiracial	1	6.7
Ethnicity
Non-Hispanic	13	86.6
Hispanic	1	6.7
Prefer not to answer	1	6.7
County designation
Urban/suburban	11	73.3
Rural	3	20.0
Frontier	1	6.7
Education
Some college	5	33.3
College graduate	5	33.3
Any post-graduate work	5	33.3
Current living situation
Live alone at home	2	13.3
Live with others	13	86.7
Live with care recipient	5	33.3
Relationship to care recipient
Spouse/partner	2	13.3
Adult child	12	80.0
Family—other	1	6.7

In the following sections, we present themes that were identified by care partners with respect to perceived usability, benefits, challenges, and recommendations for refining the adapted OurNotes tool. Within this sample, a large proportion of care partners endorsed completing the adapted OurNotes on the patient’s behalf (i.e., choosing “I am not the patient”) rather than helping the patient with the form.

Usability

In general, care partners perceived the adapted OurNotes tool to be “user friendly and efficient” (Participant C). Care partners who had “some experience with other portals” commented that completing the form was “really smooth” and “probably the best that I’ve experienced” (Participant F). With respect to the question prompts in the OurNotes tool, participants noted that it “feel [s] like there’s plenty enough room in that large box that I can type out what I need when I need it” (Participant I).

Benefits

Care partners’ descriptions of the adapted OurNotes self-identification questions were overwhelmingly positive and affirmed the benefits of clarifying the identity of the portal user in the context of dementia care. The benefits spanned individual, interpersonal, and visit levels and clustered into three themes: (1) giving care partners a voice by providing a private outlet to share their concerns, (2) helping clinicians to tailor their communication by differentiating care partner and patient perspectives, and (3) enhancing and streamlining visit communication by prompting care partners to prepare their queries in advance.

Gives Care Partners a Voice

Care partners endorsed the adapted OurNotes as a useful mechanism for communicating their concerns to clinicians. They articulated the merit of being able to “explain in our own [words] to the doctor what we’re seeing” (Participant A). They felt that the adapted OurNotes questions affirmed their involvement by providing “an opportunity to ask questions beforehand… [and] helps me because I can discuss questions with [the doctor] before [patient] comes [into the appointment]” (Participant B). In general, having a “more private communication point” (Participant E) was deemed necessary for sharing their concerns independently with the doctor. Participants further noted that the adapted OurNotes questions served to reduce care partner and patient distress by providing “an environment to be able to communicate without the feeling of, ‘Oh my God, my father’s in the room’, and I don’t wanna necessarily say something outta turn, which he could register and would be inappropriate” (Participant F).

While care partners articulated the benefits of having a direct line of communication with the clinician, they were also cognizant of the tension between communicating their own concerns and respecting the patient’s autonomy and unique perspective (Table 2, A). In recognition of this tension, care partners asserted that the adapted OurNotes questions helped to preserve rapport with the patient by fostering a climate of respect and consideration, especially in earlier stages of dementia (Table 2, B).

Table 2.

Benefits of Adapted OurNotes.

Gives Care Partners a Voice While Maintaining Respect for the Patient

A. “As far as dementia, it’s always tricky to have to talk about my father’s dementia in front of him. There are people who would say, ‘Well, no, just speak your mind because he’s not gonna remember it’. It’s still uncomfortable for a family member and at-home caregiver to deal with that. As it relates to being able to write it out, these questions or these concerns, beforehand, I can see a little more freedom there to be able to be truthful about where he is at” (Participant D)

B. “If you deal with somebody that has various stages of Alzheimer’s, sometimes it’s difficult to talk about them in front of the doctor. It’s nice to be able to type in a question that you want answered with the privacy of not having to either embarrass or engulf or point out something in front of your family member” (Participant E)

Helps clinicians to differentiate patient and care partner perspectives

C. “For the doctor to know partially if it’s someone cognizant or not, because… based on the type of question, assume that’s how my father is. I would also think that it makes sense for the doctor to probe just a little bit more if I filled [the questions] out, and kinda make sure that something hasn’t been missed, that my father would want to talk about” (Participant G)

Enhances and streamlines visit communication

D. “I’m fine with spending the time to type [the notes] ahead of time. I think our doctors’ visits are, I don’t know if they’re quicker, but they’re definitely more effective. Because we were much more efficient… OurNotes is a place where the focus just gets pinpointed” (Participant H)

E. “I don’t know if it’s part of getting older or if it’s just taking care of somebody, and everything becomes a blur. You’re kind of going… We covered that. Did we cover this? We covered that…that particular appointment was driven by my items” (Participant C)

Helps Clinicians to Differentiate Patient and Care Partner Perspectives

In addition to individual and interpersonal benefits, care partners also perceived benefits of the adapted OurNotes for clinicians. They felt that clarifying the identity of the portal user was “imperative” (Participant I) for helping clinicians to differentiate the perspective of the care partner from the patient. As one care partner explained, “there’s a world of difference between what I would say and what my mother would say… there would be some vastly different responses if it were her answering versus me” (Participant A). They asserted that knowing who completed the form could help the clinician to tailor their communication accordingly (Table 2, C).

Enhances and Streamlines Visit Communication

In addition to validating the care partners’ role and helping clinicians to contextualize the OurNotes responses, the tool was perceived to confer visit-level benefits pertaining to time and efficiency (Table 2, D). As one care partner noted, the “biggest advantage [is] saving time… being able to, in advance, think about what you need to… ask the doctor” (Participant M).

Within the visit, OurNotes served as an agenda-setting tool and memory aid (Table 2, E). One care partner explained that the “main purpose I like to get out of it when I use it is, if I have anything that I wanna have addressed at that time, I’ll put in that just to make sure. I’m really bad at forgetting to ask questions” (Participant I).

Challenges and Drawbacks

Despite repeated prompting by the interview guide, care partners reported few challenges and drawbacks to completing the adapted OurNotes questions. Although a priori codes considered care partners’ potential concerns about risks to privacy and apprehensions about self-identifying in the patient’s medical record, these codes were not supported by the data. The challenges clustered into two themes, which were not specific to the adapted OurNotes intervention: (1) rigidity and redundancy of the e-check-in process and (2) limited clinician overall responsiveness to the completed OurNotes questions.

Rigidity and Redundancy of E-Check-In

While care partners expressed positive views of completing the adapted OurNotes tool within the e-check-in process, there was a sentiment that the standard e-check-in questions were “redundant” and time consuming because “a lot of things don’t change from one visit to the next” (Participant G). One care partner emphasized how “frustrating [it is] to me that I have to keep going in and filling out all these papers every time. It’s the same questions over and over and over again” (Participant H). Another joked, “If my parents haven’t figured out their chosen sex by the age of 94, I don’t wanna have to keep answering that.” Care partners were concerned with “how long the whole [e-check-in] process takes” (Participant G) and were “irritated… because I can’t tell you how much time I spent checking [patient] in for appointments” (Participant J).

Clinician Responsiveness

In rare instances, care partners reported that their care recipient’s clinician did not read or reference the completed OurNotes questions during the appointment: “Sometimes I have to ask the doctor if they’ve looked at it, at my comments and my questions… it appears that sometimes they’re not actually looking at ‘em before the appointment” (Participant C). Less favorable perceptions of the adapted OurNotes were observed among care partners who cited experiences during which the information they provided was overlooked.

Suggestions for Refining Adapted OurNotes

Participants’ suggestions for refining the adapted OurNotes focused on incorporating new items and maximizing the tool’s flexibility. Major themes centered on the need for (1) items that elicit further details about the portal user, (2) expanded access among multiple care partners (e.g., paid and family care partners), and (3) capabilities that allow the submitted responses to be viewed and updated.

Incorporate Additional Items

Care partners cited an opportunity within the adapted OurNotes to elicit additional details about the responder’s relationship to the patient. Whereas the adapted OurNotes questions asked respondents to select the option that best described their relationship to the patient (i.e., “adult child, spouse/partner, other”) and provide their name, participants suggested that adding a “box underneath that third option would be helpful in further describing who I am… I could be more explicit. I am my father’s son. I am my father’s at-home primary caregiver. I am my father’s financial power of attorney” (Participant E). This additional context was deemed to be particularly valuable when multiple care partners were involved in the patient’s care (Table 3, A).

Table 3.

Recommendations for Refining Adapted OurNotes.

Incorporate Additional Items

A. “I think it’s important that as the medical power of attorney, I can sign certain documents from the My Health Connection… prior to [patient’s] appointments. So that in the event I send him with a [paid] caregiver… I could even say, “[Paid care partner] is bringing him to his appointment. She’s primarily a driver. She’s not really familiar with his medical history at all so if you have any questions or anything while you’re with [patient], call me” (Participant J)

Expand access to multiple care partners

B. “The family member could be [a] proxy to be able to write what they see, whereas maybe they do have a professional caregiver coming in and that person may see something totally different during that time of day or whatever. I see the importance of allow[ing] maybe multiple different people who are doing the caregiving to have access to this [patient portal information]” (Participant L)

Enable updates

C. “In dealing with… dementia, things can change from one day to the next as to what your concerns are for them or what you feel is more important to discuss than the original items that you put in one note… one thing that I would say is could I go back and at least change one item on that, on OurNotes, so that it would be brought to the doctor’s attention before I got there” (Participant K)

Expand Access

Care partners also offered suggestions that were not specific to the adapted OurNotes but were aligned with supporting care partner engagement and inclusion in dementia care processes. They advocated for expanded access to the patient portal and OurNotes questions to enable both family and professional care partners to share information and observations (Table 3, B).

Enable Updates

Care partners also asserted that portal users should be able to revisit, edit, and update the content of their responses. One care partner recounted a time when “I had about four items I wanted to take care [of], but I couldn’t remember what they were… I couldn’t access ‘em” (Participant C). The ability to re-access and edit the form was perceived as an important strategy for ensuring that the visit focused on the most pressing, relevant, and recent concerns (Table 3, C).

Discussion

As part of a real-world implementation project, this study interviewed dementia care partners to understand their experiences with and perspectives on a novel portal-based intervention, adapted OurNotes. Guided by traditional taxonomies of implementation research and user-centered design, our study focused on care partners’ perceptions of the intervention’s usability, benefits, challenges, and recommendations for future refinement, with the goal of maximizing its future utility by inviting users’ feedback and applying their experience to the research process (Czaja et al., 2019; Proctor et al., 2011). Overall, care partners’ appraisals of the adapted OurNotes were overwhelmingly positive. They perceived the tool to be easy-to-use and emphasized its utility in enhancing and streamlining visit communication and giving care partners a direct channel to express their concerns to clinicians. While few drawbacks were reported, several recommendations were proposed to enhance the impact of the adapted OurNotes, including the need for additional items to elicit details about the portal user, expanded access among multiple care partners, and capabilities to enable the submitted responses to be reviewed and updated. Overall, care partners’ favorable comments support the need for incorporating self-identifying questions within OurNotes and provide important guidance regarding potential modifications.

The present study contributes to ongoing national dialogue affirming the need for effective strategies to promote care partner participation and inclusion in clinical care processes (Administration for Community Living, 2022). Despite notable progress and guidance set forth by professional organizations (American College of Physicians, 2020; American Medical Association, 2018), clinicians continue to report uncertainty about how to involve care partners effectively and efficiently in care delivery (Griffin et al., 2022; Riffin, Wolff, Butterworth, et al., 2021; Riffin, Wolff, & Pillemer, 2021). Findings from this study offer suggestive evidence regarding the potential of adapted OurNotes to support clinicians in interactions with care partners, especially in the context of dementia care. Study participants described a cascade of advantages—encompassing individual- and visit-level benefits—that stemmed from the self-identification questions. At the visit level, care partners described the adapted OurNotes as an effective agenda-setting tool and memory aid that helped focus and streamline communication. They further contended that the adapted OurNotes questions enabled clinicians to differentiate care partners’ and patients’ perspectives, which in turn helped clinicians to tailor their communication within the visit. Care partners perceived this shift in communication to streamline visit dialogue as well as fostered a climate of respect and preserved rapport with the patient.

For care partners, a major benefit of adapted OurNotes was the ability to share their concerns directly with the clinician. Having an independent line of communication was noted as putting care partners at ease during the visit, knowing that their concerns would be addressed discreetly. The overwhelming positive and consistent feedback from care partners about their visit interactions stands in contrast with prior research that has depicted care partners’ experiences in care delivery as mixed and sometimes troubling (Levine, 1999). Prior studies and ethical commentaries have exposed care partners’ feelings of frustration, lack of support, and being overlooked or even excluded from medical discussions (Gitlin & Hodgson, 2016; Levine, 1999; Riffin, Patrick, et al., 2022). In this study, care partners viewed the self-identifying questions as an important mechanism for validating their contributions and affirming their role as essential members of the care team. Alongside these feelings of inclusion and engagement were sentiments of appreciation and respect for clinicians’ time. As a means of reciprocity, care partners were glad to assume the administrative burden of completing OurNotes in advance of the visit. Such findings are aligned with relational coordination theory, which posits that shared goals and mutual respect support effective communication and problem-solving (Bolton et al., 2021).

A core recommendation by study participants was for expanded access to enable multiple care partners, including other family members and direct care workers, to complete, review, and revise their OurNotes contributions. This recommendation aligns with emerging efforts to advance shared, interoperable electronic care (e-care) plans for individuals with chronic health conditions (Norton et al., 2022). Comprehensive e-care plans aim to improve care quality and outcomes for persons with complex health needs by enhancing communication, coordination, and information sharing among clinicians, care partners, direct care workers, and others. Evidence from our study and others helps envision potential benefits of expanded access to multiple care partners, for example, reducing gaps in care, maximizing efficiency, and ultimately improving patient care by enabling seamless information sharing across care teams (De Jong et al., 2016; Norton et al., 2022; Office of the National Coordinator for Health Information Technology, 2022). To enhance care coordination among multiple care partners, study participants recommended the inclusion of additional items within the adapted OurNotes to identify key decision-makers—specifically, health care proxies—who could help clinicians navigate visit discussions with other members of the patient’s care team. Enacting these recommendations will require coordinated action among research teams, health systems, and electronic health record vendors, such as Epic and Cerner, to consider how such functionality may be incorporated within the existing portal infrastructure. As a step toward proof-of-concept, “shared care” functionality could first be developed in a third-party mobile health (mHealth) application with attention given to interoperable architecture to enable future integration with electronic health records (Ndlovu et al., 2021).

The challenges reported by care partners in this study reiterate known barriers to implementing evidence-based tools and interventions in real-world clinical practice. Variability in clinicians’ responsiveness to reviewing completed OurNotes forms prior to or during the clinical visit has been previously described (Walker et al., 2021). To maximize clinicians’ responsiveness and uptake in real-world care delivery, small adjustments to clinical workflows paired with brief clinician-targeted education about OurNotes may be necessary. For example, as OurNotes is implemented, the standardized clinical note could automatically populate the complete responses for the clinician to review when they access their visit documentation. Alternatively, an automated notification could alert clinicians when a completed OurNotes questionnaire is submitted before a visit to prompt their review. These automated strategies may be particularly effective if combined with short education modules that increase clinicians’ knowledge of the adapted OurNotes’ benefits and ways to integrate a review of the completed form into pre-visit activities and visit discussions (Walker et al., 2021).

This study offers preliminary evidence regarding the potential of adapted OurNotes to improve care partner identification and engagement in clinical practice. However, our findings should be considered within the context of several limitations. Study participants were a largely homogeneous group of well-educated, non-Hispanic white women. It is possible that the perspectives of these care partners differ from those with lower levels of education or digital health literacy and those with different sociodemographic or cultural backgrounds. Indeed, a digital divide exists such that older adults from lower socioeconomic status, minority backgrounds, and rural areas are less likely to be able to access technology (Anderson & Perrin, 2017; Lucero et al., 2019), a finding that warrants careful consideration in future research. It is also likely that the experience and perceptions of care partners of persons with advanced stages of dementia do not reflect the views of care partners caring for persons with mild cognitive impairment, especially as they pertain to patient privacy and autonomy. Given that our sample is composed of care partners who elected to participate in a technology-focused research study, it is plausible that these care partners already have favorable views of consumer health information technology, like the patient portal. Future research will need to incorporate objective measures of digital literacy and technology use and purposefully solicit feedback from care partners who vary on these dimensions. Finally, while care partners shared positive feedback regarding the usability of adapted OurNotes, a standardized instrument such as the System Usability Scale (SUS) (Lewis & Sauro, 2009) will be necessary for triangulating and validating the findings from this qualitative study.

Conclusion

National organizations, consensus committees, and advocacy groups have long articulated the need to identify and support care partners in care delivery (Administration for Community Living, 2022; Riffin, Griffin, et al., 2022). The present research takes a pragmatic step toward that goal by adapting a portal-based intervention, OurNotes, to promote care partner identification. Study participants shared overwhelmingly positive views of the adapted OurNotes, citing benefits to care partners, patients, and clinicians. They also posed several recommendations for enhancing the intervention’s impact, such as expanding access among multiple care partners and enabling capabilities to revisit and revise their responses. To the extent that portal use becomes more widespread, close collaboration on the part of research teams and health systems will be necessary to enact these recommendations and set the stage for expanding care partner identification to other vulnerable groups (Wolff et al., 2022).

Supplemental Material

Supplemental Material - Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care

Supplemental Material for Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care by Catherine Riffin, Jessica Cassidy, Jamie M. Smith, Erika Begler, Danielle Peereboom, Hillary D. Lum, Catherine M. DesRoches, and Jennifer L. Wolff in Journal of Applied Gerontology.

Supplemental Material

Supplemental Material - Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute on Aging R35AG072310 to JLW, K01AG61275 to CAR, and T32AG066576 which supported the effort of DSP and JMS and by the National Center for Advancing Translational Sciences (NCATS) Grant Number UL1 TR002535 for REDCap use. The content is solely the responsibility of the authors and does not necessarily represent official NIH views.

IRB Approval

Colorado Multiple Institutional Review Board (COMIRB) (approval #22-0606) approved the study.

ORCID iDs

Catherine Riffin

Jessica Cassidy

Hillary D. Lum

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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