Healthcare Quarterly

Healthcare Quarterly 24(1) April 2021 : 69-75.doi:10.12927/hcq.2021.26462
Empowering Patients

“This Is ME”: Promoting Person-Centred Care within the Digital Health Environment

Lydia Sequeira, Colin Chu, Aileen Sprott, Rani Srivastava, John Strauss and Gillian Strudwick

Abstract

In this paper, we describe the implementation of an initiative called "This Is ME," which involves a change in the summary page of a patient's electronic health record in order to include their story and provide a more humanistic perspective. The change includes information related to their family, hobbies and interests – a change that has important implications for facilitating conversation and relationship-building between providers and patients. Since implementation, 1,246 (and counting) patient stories were shared with over 300 healthcare providers, including nurses, social workers, physicians and others. We also share the results of our evaluation of the initiative and provide recommendations for organizations embarking on similar initiatives.

Introduction

The adoption of electronic health records (EHRs) in Canadian healthcare has been widespread over the past two decades, with an adoption rate of 82.4% among physicians in recent years (CMA 2017). Commonly reported benefits of such technologies include improved patient safety, record-keeping and time savings (Chang and Gupta 2015). However, with this shift has also come the proliferation of checklists, flowsheets and an abundance of structured data with minimal patient context (Collins and Vawdrey 2012). Continued performance metric reporting has created a larger demand for capturing accurate, structured data, as does the use of clinical documentation for nonclinical and research purposes (Kim et al. 2019). In addition, the use of non-user-centred EHR designs contributes to increasing frustration among healthcare providers, which at times can lead to unintended consequences (Colicchio et al. 2019).

EHRs, along with the increase in digitized data from laboratories and diagnostic imaging, are replacing a method of thinking and recording data that is structured around the patient narrative – an aspect of documentation more prevalent in the hand-written chart (Moros 2017). While quantitative data are essential for medical management, focusing primarily on these attributes can lead to the depersonalization of patients, whereby healthcare providers are more inclined to refer to a broader healthcare label such as "the chronic patient" rather than a personalized part of their identity, such as "a mother of four" (Skylar-Scott and Wu 2017). Certain domains of healthcare, such as mental health, demonstrate the importance of narrative-based medicine (Greenhalgh 1999), whereby healthcare providers listen to their patients' stories, experiences and explanations and gather meaning from the experiential and narrative texts. Such patient-specific descriptions can be lost with the standardization of clinical documentation in EHRs (Strudwick and Eyasu 2015). Building the patient's story has been described as a vitally important skill that is required to provide care within an interprofessional team, and EHRs – with limited free-text spaces and narrative notes – can obstruct healthcare providers' ability to build the patient's story by fragmenting parts of the story (Varpio et al. 2015). It is the importance of the patient narrative that forms the central concept of person-centred care, which suggests that people need to be seen in their biopsychosocial entity (Henbest and Stewart 1989), drawing focus to patients' personal identities (Armstrong 1982; Olsson et al. 2013). This type of care relies on the therapeutic relationship between the care provider and the patient. With the use of EHRs, there is a possibility of amplifying an already prevalent inclination to miss cues about patients' everyday lives that are essential for understanding context and proving compassionate, patient-centred care (Lown and Rodriguez 2012).

Purpose

To further humanize patients in the presence of technology, we report on an initiative called "This Is ME," which involves a change in the summary page of a patient's EHR to include narratives such as the patient's story, family, hobbies and interests. This tool has important implications for facilitating conversation and relationship-building between healthcare providers and patients and acknowledges a patient's identity and humanity (Skylar-Scott and Wu 2017). Within this paper, we describe the (1) design and build, (2) implementation and (3) evaluation of the initiative. For the purpose of this paper, a greater emphasis will be placed on the evaluation aspects, and recommendations will be provided.

The "This Is ME" Initiative: Design and Build

"This Is ME" was implemented at the Centre for Addiction and Mental Health (CAMH), which has over 35,000 patients with diagnoses across the mental health spectrum, including schizophrenia and psychotic disorders, substance-related and addictive disorders, and bipolar and related disorders (CAMH 2019). The hospital's integrated EHR system was implemented in 2015 and encompasses information on the entirety of care, from registration to discharge, including clinical documentation, medication administration, laboratory services for all patients (including in-patients), emergency admissions and out-patients. The organization has achieved stage 7 on the electronic medical record adoption model of the Healthcare Information Management System Society (Sulkers et al. 2019). "This Is ME" consists of a new patient-landing page in the EHR that includes a patient narrative to help further humanize the patient, moving beyond the clinical diagnosis (Figure 1). This editable landing page was introduced along with an accompanying EHR form for documentation. Information on the patient's hobbies, interests, family and coping strategies are included to help staff develop a more holistic understanding of the patient they are caring for. Prior to this, healthcare providers viewed a patient summary page, which primarily focused on clinical risk scores and diagnoses. This summary page lacked valuable information about personal characteristics that would make a patient more "real" and "human" to healthcare providers.


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The "This Is ME" initiative was closely aligned with an organizational strategic initiative to enhance safety, which included a project called "Safewards." This project entailed enacting a series of evidence-based interventions to reduce agitation and aggressive behaviour among patients through supported staff and patient interactions (Bowers et al. 2015; CAMH 2018). "This Is ME" is based on the principles of the Safewards model's "Know Each Other" intervention, which states, "While we collect lots of information about patients on admission, little of it provides a basis for relationship building, chatting and general friendliness. … [This will] facilitate conversations and enhance relationship building … making conflict less likely." (Victoria State Government 2016: 15)

The initiative was developed using a participatory approach, with consultation from a variety of stakeholders, including social workers, mental health nurses, a peer support worker (an employee with lived experience), patient engagement experts, designers and clinical applications/technical staff. Beginning in April 2018, a working group met biweekly to support the technical build and content phase of the project. Over six months, discussions involved making decisions regarding which pieces of information to include on the new landing page, how to gather the patient's story, technical functionality and the overall design of the landing page.

The Implementation of "This Is ME"

The initiative went live in October 2018 and was included as a required admission documentation for all in-patients. Through working group discussions, social workers across the organization were selected as the primary story-telling facilitators, given the importance of narratives in social work (Urek 2019). Training and education around using the form included unit visits and drop-in lunch-and-learn sessions for staff, nurse educators and advanced practice clinical leaders and were carried out by clinical informatics nurses and clinical applications staff. All staff also had access to how-to documents and educational resources on the organizational intranet, and on the day of the launch, clinical informatics nurses and clinical application staff carried out travelling tutorials across the hospitals, with refreshers on how to use the form and the landing page. Widespread communication was used to inform staff about the initiative, including an e-bulletin from the chief of Nursing and Professional Practice and EHR-update newsletters that were sent through unit managers to healthcare providers. Finally, an automated reminder to fill out the patient story for new patients within 72 hours of admission was triggered within the EHR for social workers, according to the agreed-upon admission standard at the organization.

Evaluation

Evaluation approach

In the year following the implementation of the initiative, we carried out an evaluation of the intervention to:

  1. understand the interest in and usage of the initiative over time;
  2. examine healthcare providers' perceptions of the initiative, specifically around viewing EHRs in a more holistic representation of each patient and the usability and user experience of the initiative; and
  3. explore patients' perceptions of the initiative as they relate to their healthcare providers' knowledge about their interests, family, coping strategies and other personal information.

This evaluation was completed through a multi-method retrospective approach. In order to understand the interest in and usage of the initiative over time, we used back-end EHR reports to provide an overview of which clinical disciplines interacted with the intervention and patients' interest in the initiative (i.e., percentage of patients who choose to participate). To examine healthcare providers' perceptions of the initiative, we distributed an online survey through REDCap (a secure web application for building and managing online surveys) (Harris et al. 2009), which took approximately 10 minutes to complete. The survey was developed from previous evaluation literature on person-centred care and communication (de Silva 2014), the System Usability Scale (Lewis 2018) as well as qualitative literature on evaluating EHR forms (Rosenbloom et al. 2007). Finally, to examine patients' perceptions of the initiative, we surveyed patients in person. The survey was developed based on the Person-Centred Climate Questionnaire–Patient (Yoon et al. 2015) and general person-centred literature. Ethical approval was granted through the CAMH Quality Projects Ethics Review process.

Evaluation results

Interest and usage over time

Since implementation, our back-end EHR usage data have shown that 345 healthcare providers from 13 different disciplines have interacted with the end page (including initiating story-writing and updating details), with a majority being from nursing (61%) and social work (24%) (Table 1). This distribution is expected because nurses are the largest healthcare provider group at the organization and are involved in direct patient care, while social workers were specifically tasked with leading this intervention.


Table 1. Healthcare provider users of "This Is ME"
Role Frequency
Nurse 209
Social worker 84
Physician 19
Recreational therapist 7
Occupational therapist 7
Child youth worker 4
Advanced practice clinicians 4
Personal support worker 3
Behaviour therapist 3
Unit clerk 2
Program assistant 1
Spiritual care provider 1
Nurse practitioner 1

 

Figure 2 presents the number of patient stories entered on a monthly basis from implementation until August 2020). A decline occurred during the early stages of the COVID-19 pandemic (April and May 2020), but the number of patient stories has increased since.


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Healthcare provider perspectives

In general, findings of the healthcare provider surveys have shown that healthcare providers found "This Is ME" to be a helpful tool. More specifically, healthcare providers found the narrative within "This Is ME" to be important for getting to know their client and frequently reviewed the clients' stories (71.4%), safety and comfort plans (57.1%) and the care-team detail sections (47.6%) of the chart (n = 21). Figure 3 provides the reasons reported by healthcare providers for using the "This Is ME" end page.


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In all, 63.1% of healthcare providers (n = 19) reported that the form was easy to use, and 66.7% reported this about the landing page (n = 18). Healthcare providers have also reported that this initiative has "helped spark initial conversation with clients" and "helped facilitate rapport building and allowed the client to disclose things about themselves that they may otherwise not have shared (e.g., relationship dynamics with family, how they view themselves in terms of positive qualities and skills)." Over 60% identified that the narrative captured from this initiative was important for getting to know their client (n = 21), with specific feedback, such as:

[This page] humanizes the client (patient) and allows the team to get to know the person beyond their presenting mental health/addiction issues. (Healthcare provider)

Through these surveys, areas for improvement have also been highlighted, including time-management challenges with completing the form and the need to add additional contact information, all of which are important as the organization looks to enhance the initiative.

Patient perspectives

Since the launch of the initiative, approximately 72% of patients reported being interested in contributing to "This Is ME" to fill out their story. There is a strong consensus among surveyed patients that when filled out, the "This Is ME" end page can help their healthcare providers know them better, with 86.9% agreeing or strongly agreeing to this (n = 23). Patients have also provided feedback on other important prompts that can be added to the "This Is ME" form (including volunteerism and long-term goals). A patient mentioned that using it brought forth the idea of "everyone [healthcare providers] being on the same page." Another client found the experience of completing the form "reflective." Areas of improvement have also been identified, including increasing the awareness of the initiative among patients and ensuring that the form is filled out when the patient is comfortable in their new environment, as patients echoed the notion that admission "can be quite an emotional time."

Recommendations

Given our work on this initiative, we provide the following recommendations for other organizations to consider if undertaking similar initiatives:

  1. Work with patients and healthcare providers to identify what content should be included on the landing page.
  2. Co-design the landing page "look and feel" with patients and healthcare providers such that it meets both groups' needs.
  3. Ensure a technical team member is present during design sessions to know what is technically possible. For example, this may include what information can be shared/pulled from other parts of the record.
  4. Ensure that there is a robust training and education plan prior to implementation so that all healthcare providers that are responsible for entering content and using the end page are aware of it and know how to use it.
  5. Ensure that there is leadership "buy-in," so that resourcing is present for the technical build, co-design and education/training, and healthcare providers are encouraged to use the end page.
  6. Make any policy or procedural changes in advance of its implementation. For example, if certain healthcare providers are expected to be responsible for ensuring that patients have been asked to participate, this should be documented somewhere, followed by regular evaluation of whether this is in effect.
  7. Communicate that the initiative will be implemented.
  8. Choose a creative name for the end page.
  9. Ensure that there are ample paper copies of the form accessible, or provide access to an electronic form, so that patients can fill it out at their own pace and at a time that is most suitable for them.
  10. Engage colleagues with reporting and analytics responsibilities so that you can pull usage data to assess uptake.

Conclusion

In summary, this paper provides an overview of the design and build, implementation and evaluation of an initiative that would enhance how patients are perceived within the EHR system by providing a more humanistic approach to what is typically present within these systems. This initiative was an intentional way of bringing patient stories and a more human perspective to the EHR to facilitate narrative- and relationship-building between patients and healthcare providers. With the increasing use of technology in many spheres of healthcare, there is a need to intentionally think about how to maintain compassion and humanistic care. "This Is ME" is one way to bring a patient's story into technology and also "front and centre" for healthcare providers. In doing this work, it is important to partner with patients and healthcare providers to ensure that it is done in a meaningful and appropriate manner. 

About the Author(s)

Lydia Sequeira, MHI, is a PhD candidate and researcher at CAMH in Toronto, ON. She can be reached by e-mail at Lydia.Sequeira@camh.ca.

Colin Chu, BA, is a senior project manager at CAMH in Toronto, ON.

Aileen Sprott, MA, is a risk specialist at CAMH in Toronto, ON.

Rani Srivastava, RN, PhD, is an associate professor and the dean of Nursing at Thompson Rivers University in Kamloops, BC. She was previously the vice president and chief of Nursing and Professional Practice at CAMH.

John Strauss, MD, MSc, is a clinician scientist at CAMH in Toronto, ON.

Gillian Strudwick, RN, PhD, is the chief nurse (interim) and an independent scientist at CAMH in Toronto, ON.

Acknowledgment

The authors would like to acknowledge CAMH in Toronto, ON, for its in-kind contribution and AMS Healthcare (as a part of Dr. Strudwick's AMS Phoenix Fellowship).

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