Patient-reported measurement opportunities of diagnostic excellence: From whom,what,when,and where

Abstract

Background

Diagnostic excellence is an emerging construct that could be further operationalized by capturing relevant domains of experiences and outcomes reported by patients and care partners. Characterization of when, where, and how these domains can be assessed while considering populations most vulnerable to diagnostic disparities, is critical.

Objective

We aimed to devise a framework for patient-reported measurement opportunities to center patients and health equity in diagnostic excellence.

Methods

Adapting an existing set of patient diagnostic error journeys, we used human-centered design to illustrate additional journeys and identify opportunities for patient reporting on their experiences and outcomes throughout. We mapped previously identified diagnostically relevant patient-reported domains into the journeys exploring specifications of these domains from diagnostic error to diagnostic excellence. We relied on internal expert consultations and a five-session international expert convening.

Results

We grouped patient journeys into seven pairs of diagnostic error and counterfactual excellence scenarios including journeys of those who are “invisible” to the health system. We organized the journeys into a taxonomy based on their timing, setting, and diagnostic care utilization. The domains were specified under diagnostic excellence and aggregated into a 21-domain map. We identified up to four measurement opportunities throughout diagnostic journeys: Pre-encounter, within-encounter, immediate post-encounter, and subsequent cross-sectional. We synthesized the taxonomy, domain map, and measurement opportunities into a multi-part framework for patient-reported measurement of diagnostic excellence.

Conclusions

The presented framework informs patient-reported measurement for the emerging construct of diagnostic excellence and anticipates needs for a suite of patient-reported measures for various settings and timings.

Keywords

Diagnostic excellence patient reporting disparities measurement framework

Introduction

Diagnosis is a complex, iterative, collaborative process and its result, which, factoring in diagnostic uncertainty, aims to provide a precise and complete understanding of a patient's health problem.¹ The field of study and practice concerned with measuring and improving this process and its outcomes has recently become known as diagnostic excellence, where diagnostic excellence also denotes the ultimate goal and the continuum to reach that goal.^2,3 The focus shift from diagnostic errors to diagnostic excellence requires rethinking measurement architecture similar to Safety I and Safety II.^4,5 The role of patients and, more specifically, patient reporting in measurements of diagnostic excellence and diagnostic improvements merits attention and exploration. The use of ****patient-reported outcomes (PROs) and patient-reported experiences (PREs) is established in medical treatment and clinical research, but they only recently have found their way into diagnosis, joined by additional forms of patient reporting, such as patient narratives.^6,7 Patient reporting brings unique value to diagnostic excellence as it allows the most continuous and comprehensive understanding of the entirety of patient diagnostic journeys before, across, between, and, sometimes, instead of patient engagements with the health system. The multitude of such journeys and engagements makes the determination of measurement opportunities for patient reporting on diagnostic excellence rather complex, generating the need for thorough exploration. Finally, it is essential to leverage patient reporting to advance diagnostic excellence, particularly given its potential to catalyze patient-centeredness, diagnostic co-production, broader patient engagement in patient safety, and diagnostic health equity.^8–10

A recent scoping review delineated a range of PRO and PRE domains relevant to diagnosis as a process and diagnosis as an outcome. It grouped those domains into two distinct timing and setting junctures for assessment.¹¹ Creating a range of potential diagnostic journeys onto which these domains can be mapped to visualize measurement opportunities is important and missing. The gap is even more evident for the diagnostic journeys of those who do not engage or partly engage with the health system and whose experiences and outcomes are not captured in traditional clinical literature. Achieving equity, as a fundamental part of diagnostic excellence, requires that patient reporting originates from diverse patients and their care partners (family, friends, patient advocates, or others who partner with patients to co-manage their diagnostic care) to understand and improve their PROs and PREs.^12,13

Aiming to understand how patient-reported measurement opportunities might be leveraged to drive diagnostic excellence, this study sought to: (1) Describe a variety of patient diagnostic journeys for equitable capturing of PROs and PREs (from whom); (2) map previously identified diagnostically relevant patient-reported domains onto these journeys exploring specifications of these domains along the continuum from diagnostic error to diagnostic excellence (what); and (3) organize findings into a framework for patient-reported measurement opportunities of diagnostic excellence that presents specific timing and setting opportunities of assessment (when and where).

Methods

Identification of relevant prior work as inputs to this project

As the inputs, we used diagnostic case snapshots from the National Quality Forum's report on improving diagnostic quality and safety¹⁴ and diagnostically relevant PRO and PRE domains from the published scoping review.¹¹ The report presented 12 snapshots of diagnostic errors with three examples for each use case organizing cases by error root causes. The review classified 41 domains (10 were PROs, 28 were PREs, and three were mixed PRO/PRE) as either assessed by (1) patients reflecting on a specific diagnostic encounter immediately after that encounter (27 domains) or (2) patients reflecting on their experiences or outcomes over the entire diagnostic journey, cross-sectionally (14 domains). This review's classification was derived from the current literature describing assessments of these domains. Importantly, the list of the domains identified in the review was not intended to be exhaustive, and both substantive differences and overlaps among the domains were noted.

Adopting, expanding, and organizing snapshots into a taxonomy of diagnostic journeys

Human-centered design is an iterative problem-solving approach that prioritizes user needs, involving empathy, co-creation, and iterative prototyping to develop effective, user-friendly solutions, including visualizations. It is extensively employed in health sciences and guided our approach to concretizing diagnostic journeys for this study's goals.^15–19 We reorganized the prior set of diagnostic error snapshots by timing and setting as described in these snapshots to inform measurement opportunities for patient reporting and potential feedback to care. Where appropriate, settings were further classified based on patient-reported diagnostic care utilization. We did not group the snapshots based on health conditions or final diagnoses, as that organizing approach reflects treatment-oriented patient-reported measurement and would not support the aspiration to develop prospective measures of diagnostic excellence. Then, we added narrative descriptions of diagnostic excellence scenarios (what-if scenarios) depicting counterfactual journeys to the examples focused on diagnostic errors to form diagnostic journey pairs. Finally, the research team added patient diagnostic journeys to represent those who are absent if assessments of diagnostic excellence are done only at specific care settings or only triggered by a patient's health concern. Each diagnostic journey pair was given both a name and double hashtag to provide meaningful linkages between different visual components without any arbitrary numeration or ordering of journey pairs.

Aggregation and specification of the domains into a domain map

In this study, the original domains were aggregated and specified along the continuum from diagnostic error to diagnostic excellence. The aggregation aimed to create linkages to domains assessed by existing patient-reported instruments whenever possible and was a practical attempt to limit the overall number of domains to a manageable quantity.¹¹ The aggregation intention aimed to be illustrative and not definitive. The specifications of patient-reported assessment were conceptualized based on potential response patterns. We maintained focus on generic domains as opposed to domains specific only to a particular symptom or condition.

Identification of additional patient-reported measurement opportunities

The domain map and taxonomy were presented at the five-session expert convening of 24 international experts from USA, Canada, UK, Australia, Germany, and Switzerland.¹¹ The participants represented expertise in patient-reported measurement, elicitation of diagnostic journeys, patient advocacy, health services research, communication science, and equity and patient-centeredness of care. The expert convening was held virtually in June 2021 as five 2-h sessions. Each session with new content was offered twice to accommodate attendees across the globe. Experts were chosen based on their relevance to explorations of patient reporting to advance diagnostic excellence. The research team consisted of 2 conveyors, 1 human-centered design expert, a 5-member advisory group, and an ad hoc group who piloted the expert convening materials. The expert group size was a balance between the desired representation and manageability of the group. The experts were identified via literature sources as the authors of the most relevant publications, nominations by the advisory group, and referrals from the initially invited experts. In session 1, the experts critiqued the domain map, suggesting missing domains and alternative domain aggregations, and in session 2 they critiqued the taxonomy and identified additional opportunities for patient-reported assessment not present in the reviewed literature. During session 3, the experts were presented with the framework for their discussion; the remaining sessions allowed time for additional feedback. This feedback supplemented earlier feedback from internal expert consultations and patient advocates. All convening sessions were facilitated by the research team that included a human-centered designer.

Visualization and creation of a framework

The human-centered designer used visualization methods to illustrate domains of the domain map and patient journeys in the taxonomy. The designer placed narratives of the error and counterfactual excellence scenarios on opposite sides (left, right) of each diagnostic journey pairing, with the pairs unified and accompanied by the same visuals and hashtags. As each diagnostic journey illustrates several domains that can be assessed by the patient or care partner at different timing opportunities, pictograms for these domains and their names are also part of the visuals. Those visualization elements were used in creating a multi-part framework for patient-reported measurement opportunities of diagnostic excellence. This creation was informed by the literature on earlier PRO framework development activities and conceptualizations.^20–26 Human-centered design overall guided the process of this creation, including iterative methods for interviews with the participants, approaches to composing equitable teams, structure and workflows for the expert convening, and active engagement with visualizations.²⁷

Results

We first present the elements of the framework—taxonomy of diagnostic journeys (from whom), domain map (what), and four measurement opportunities (when and where)—and then the unifying framework for patient-reported measurement opportunities of diagnostic excellence.

Taxonomy of diagnostic journeys (from whom)

The 12 snapshots were organized by timing and setting as summarized in Table 1. For emergency department and outpatient settings, the settings were further classified based on patient-reported diagnostic care utilization as one urgent visit, a series of urgent visits, or multiple regular visits. This resulted in five groupings and five pairs of journeys with added counterfactual diagnostic excellence journeys. Two new diagnostic journey pairs were added: (a) of those who undergo routine screenings where no specific health concerns bring patients into the diagnostic process, but both diagnostic errors and diagnostic excellence are possible; (b) of those who are not engaged with the health systems in their diagnostic capacities, due to barriers to access or due to previous disengaging experiences.²⁸ (See Table 1 footnote for clarifications on wording of “engaged.”) This resulted in a taxonomy with seven pairs of diagnostic journeys.

Table 1.

Taxonomy of diagnostic journeys.

Diagnostic error/excellence journey names	Journey pairing hashtags*	Post-encounter timing	Post-encounter setting
Risk in hospital bed/during hospitalization	#InBedRisks/#HospitalStay	Within hours or days	Inpatient
Unresolved emergency/after emergency discharge	#ByeByeED/#WatchOut	Within days	Post an emergency department discharge or post an urgent outpatient visit
Persisting acute concern/outpatient acute concern	#QuickToDoc/#SuddenPain	Within weeks	Post a series of outpatient visits
Missed hospital follow-up/Following hospital discharge	#AfterHospital/#HomeworkToDo	Within months or years	Post inpatient discharge
Persisting chronic concern/Chronic concern	#DocAfterDoc/#RepeatsAgain	Within months or years	Post multiple outpatient visits or post multiple emergency department visits
Routine screening complications/General public screening	#AtScreen/#TestTime	Within weeks	Post routine screening
	#NoDoc/#NotForMe**	“Invisible” diagnostic journey of those who are not engaged*** with the health systems in their diagnostic capacities

Hashtags were used as alternatives to diagnostic journey names as more relatable to some expert convening participants.

Diagnostic excellence scenarios for the #NoDoc/#NotForMe diagnostic journeys will lead to patients becoming “visible” to the health systems and engaging with the system via the timing and setting that will position them into the other six diagnostic journey pairs.

***

The expert convening deliberated alternative wording to “engaged,” such as “integrated,” “incorporated,” or “engaging.” None of those four words do due diligence in describing a heterogenous group of people for whom post-encounter settings are not applicable and who either are (1) not willing to engage with the health systems, including those using services based on alternative models of health, (2) those who were betrayed²⁸ or failed by the health system and who do not want to repeat such experiences, or (3) those who are willing to be engaged but face access barriers or system flaws preventing them from being engaged. Further, the language should neither suggest that being engaged is a preferred state and that the health system (based on Western medicine) is the ultimate end and better than others, nor should the language suggest that the responsibility for being engaged lies solely on the individual versus the health system that ought to be inclusive.

Domain map (what)

The 41 diagnostically relevant PRO and PRE domains were aggregated into 21 domains for parsimonious visualization purposes, as shown in Figure 1, using domain labels and pictograms. Additional details on these domains, source mapping, and classification into specification types are available in Appendix, pages 2–4. The domain map in Figure 1 displays patient-reported assessments for the aggregated domains as done immediately post-encounter(s) (for 10 domains) and subsequently and cross-sectionally (for 11 domains). Most of the aggregation was done for communication-focused domains (Appendix, pages 5–9). The specification types were conceptualized to illustrate continuums for patient-reported assessment and included three basic pattern types with two subtypes for each based on whether the domain is positively (Type 1a [3/21 domains], 2a [11/21], 3a [1/21]) or negatively (Type 1b [2/21 domains], 2b [3/21], 3b [1/21]) directed (Appendix, pages 10–15). This resulted in a domain map with 21 domains, illustrating one way to aggregate the domains and conceptualize how they could relate to the construct of diagnostic excellence.

Figure 1.

Domain map: Illustration of patient-reported domains for assessments of diagnostic excellence. The map shows PRE domains at left, mixed PRO/PRE in the middle, and PRO at right. See Appendix, pages 2–4 for details on the domains. Domains suggested to be assessed immediately post-encounter(s): PRE: Satisfaction (with diagnostic encounter(s)); Respect (during the diagnostic encounter(s)); overall communication experience; awareness of pending diagnosis; uncertainty; accuracy of information; care partner/family involvement in the diagnosis process. PRO/PRE: Distress. PRO: Remaining health concerns; Perceived trajectory of recovery. Domains suggested to be assessed subsequently and cross-sectionally are PRE: communication of diagnosis; long-lasting experience; connected and coordinated encounters. PRO/PRE: Diagnostic accuracy; diagnostic timeliness. PRO: Harm; recovery/permanence; potential harm; self-advocacy affirmation; future trust; engagement with health systems. PRE: patient-reported experience; PRO: patient-reported outcome.

Measurement opportunities (when and where)

Two measurement opportunities follow the findings of the scoping review: Patient-reported assessments directly after a diagnostic encounter(s) and assessments reflecting on experiences or outcomes over the entire diagnostic journey, cross-sectionally. Post-encounter(s) assessments should happen at multiple points (days, weeks, and months later) to track different PREs and PROs, more salient at various time points, or to capture changes in these domains over time. For patients with multiple visits, assessments might occur both after each encounter and after completing all visits. Cross-sectional assessments are agnostic of setting and allow capturing diagnostic journeys of those who are not engaged or partly engaged with the health system.

Two additional opportunities for patient-reported assessment, or “meeting points,” were introduced in this study: pre-encounter, as patients prepare for their visits to reflect on their previous experience, and within an encounter, most relevant to hospitalized patients whose encounters have prolonged durations. For example, pre-encounter, patients might assess the accuracy of information in their records allowing them to correct any mischaracterizations. Within-encounter, patients might provide ongoing feedback about communication, their concerns, or emotional distress, allowing the team to respond to these assessments during the same encounter.

All four measurement opportunities are utilized in the novel framework developed in this study, aligning the timing of patient reporting with instances convenient for patients or their care partners including patient advocates. However, the measurement of specific domains from the domain map during the meeting points is illustrative and has not been fully incorporated into the domain map or taxonomy due to a lack of published literature documenting such assessment instances.

Framework for patient-reported measurement opportunities of diagnostic excellence

The novel measurement framework consists of eight parts unifying the previous elements: From whom, what, where, and when. Figure 2 presents part I of the framework depicting the seven diagnostic journey pairs from the taxonomy on the continuum between diagnostic error and diagnostic excellence. Figure 3 presents part II of the framework and exemplifies charting domains from the domain map onto one of the diagnostic journey pairs. (Parts III-VII (Appendix, pages 16–20) exemplify such charting for the remaining six journey pairs.) Descriptions of the diagnostic journeys illustrate domains from the domain map and the salience for reporting these domains by patients or care partners specific to that journey. Figure 4 is the final part VIII of the framework that presents timing and setting measurement opportunities. This part of the framework uses only two of the four opportunities following the taxonomy it illustrates.

Figure 2.

Part I of the framework for patient-reported measurement opportunities of diagnostic excellence. This part shows the overall continuum of diagnostic excellence, from diagnostic journeys with diagnostic error (moonlight, in gray tones representing varying degrees of inequities and partial to non-engagement with the health system) to diagnostic journeys with diagnostic excellence (sunlit, equitable and with full engagement). Under diagnostic excellence, those formerly invisible to the health system merge, based on timing and setting of interactions with the system, into one of the six journey pairs. Under diagnostic excellence, those undergoing routine population screening, formerly outsiders, become part of the health system in its advancement of diagnostic excellence for everyone.

Figure 3.

Part II of the framework for patient-reported measurement opportunities of diagnostic excellence. This part presents the diagnostic excellence continuum and measurement opportunities for one of the diagnostic journey pairs (#InBedRisks/#HospitalStay). (See Appendix, pages 16–20, for parts III–VII presenting remaining diagnostic journey pairs.).

Figure 4.

Part VIII of the framework for patient-reported measurement opportunities of diagnostic excellence. This part presents the timing and setting of measurement opportunities.

Variety of patient diagnostic journeys

The framework acknowledges that diagnostic journeys are unique and supports exploration of the variation in how salient different domains are relative to various types of journeys (see Appendix, pages 21–24, for eight additional diagnostic journeys). This exploration demonstrated that anticipating which domain will be salient prospectively for each diagnostic journey and, hence, useful for assessment, is not always feasible. This exploration also allowed illustration of each domain from the domain map through both diagnostic error and diagnostic excellence journey descriptions.

Discussion

To address currently prioritized challenges in patient-reporting²⁹ impeding the advancement of diagnostic excellence and diagnostic equity, we synthesize elements necessary to reflect the complexity of the continuum from diagnostic error to diagnostic excellence into a novel eight-part framework for patient-reported measurement opportunities of diagnostic excellence. As the first element (from whom), we present a taxonomy of diagnostic journeys that groups these journeys into seven pairs based on timing, setting, and diagnostic care utilization, thereby identifying opportunities for patient reporting. As the second element (what), we create a 21-domain map that suggests an easy-to-visualize way to aggregate and specify earlier identified domains relevant to diagnosis as domains for patient-reported assessment opportunities of diagnostic excellence. During aggregation from 41 domains¹¹ from a prior study to 21 illustrative domains, we conceptualize three potential specification patterns evident in patient-reported assessments. By describing a variety of diagnostic journeys, we acknowledge the salience of different domains for each unique journey and illustrate each domain through diagnostic journey descriptions. As the third element (when and where), we present a total of four measurement opportunities, two documented in the literature and two introduced by our experts, indicating where cross-sectional measurement is agnostic of setting.

The difference between measurement opportunities reported in the literature and those introduced by the expert convening reflects that current literature mostly represents the use of patient-reporting for diagnostic research, and not yet for real-world real-time interventions. Thus, newly introduced measurement opportunities, such as “meeting points,” are conceptualized to be intervention points for care delivery along with quality improvement and research interventions. As patient reporting is increasingly viewed as a part of shared decision-making and meaningful patient and family engagement in patient safety,^30–33 timing of patient-reported assessments, their analysis, and acting on those will be shifting to more proactive and thus, condition-agnostic, for diagnoses yet to be established. Future measure development in patient-reported diagnostic excellence ideally would facilitate a diagnostic co-production paradigm.^34–37

This work has its limitations. The variations in salience of domains across diagnostic journeys raises the question of whether it is feasible to aggregate domains equitably. For instance, the expert convening voiced concerns over the illustrative aggregation of 16 communication-focused domains. Even though these are numerous enough to argue for aggregation, each represents a unique and important part of patient experiences of the diagnostic process. While alternative ways to aggregate or group communication domains were suggested,^38,39 the process requires further elaboration, agreement between multiple interested parties, and diligence around equity, so the presented domain map should be treated as illustrative of the need to aggregate the domains rather than of the need to establish finalized domain definitions. The conceptualized basic pattern types of patient-reported assessment specifications require empirical testing. Finalized domains and their specifications should be defined through clinimetric assessments^40,41 and other rigorous methods, replacing the current illustrations of the domains.

Conclusions

This measurement framework supports the development of de novo patient-reported measures to assess the full range of diagnostic experiences and outcomes of patients and their care partners and presents different nexuses of domains, settings, and timing. Patient-reported assessments along diagnostic journeys bring unique value and might be leveraged for proactive diagnostic excellence interventions manifesting diagnostic co-production and advancing diagnostic health equity.

Supplemental Material

sj-pdf-1-cri-10.1177_25160435251341056 - Supplemental material for Patient-reported measurement opportunities of diagnostic excellence: From whom, what, when, and where

Supplemental material, sj-pdf-1-cri-10.1177_25160435251341056 for Patient-reported measurement opportunities of diagnostic excellence: From whom, what, when, and where by Vadim Dukhanin, Lakshmi Krishnan, Anushka Jajodia and Kathryn M McDonald in Journal of Patient Safety and Risk Management

Footnotes

Acknowledgements

The authors would like to acknowledge international experts at the expert convening as well as our internal advisory group. Their intellectual contributions were critical to this work. The authors would like to acknowledge Megan Clark for her editing work and dedication.

Authors’ contributions

KM conceptualized and designed the study, as well as obtained the funding and provided the supervision. KM and VD acquired the data. KM, LK, and VD analyzed and interpreted the data and drafted the manuscript. AA provided support with the visualization. All authors critically revised the manuscript and contributed important intellectual content.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this study was provided entirely by a grant from the Gordon and Betty Moore Foundation (Grant No.: 8550). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

Declaration of conflicting interest

All authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability

Materials will be made available upon request to corresponding author.

ORCID iD

Vadim Dukhanin

Supplemental material

Supplemental material for this article is available online.

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Supplementary Material

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