Can patients contribute to enhancing the safety and effectiveness of test‐result follow‐up? Qualitative outcomes from a health consumer workshop

Abstract Background Missed test‐results and failure to follow‐up test‐results are major patient safety concerns. Strategies to improve test‐results management have predominantly focused on clinician‐based interventions, with patients principally involved in studies of test‐result communication preferences, the impact of patient portals or experiences with reporting processes in primary care. Objective To identify consumer perspectives and experiences of the challenges they have faced with test‐results management, through consumer participation in qualitative data analysis. Design and participants Volunteers (n = 10) were recruited to participate in a health consumer reference group workshop on test‐results management. Prior to the workshop, consumers selected topics for discussion using a preference poll. During the workshop, consumers participated in qualitative data analysis of de‐identified excerpts of previously collected interview data discussing hospital test‐results management. Researchers (n = 5) guided consumers through the analytical process and discussion of themes. Discussions were audio‐recorded and transcribed for qualitative analysis. Results Consumer‐selected topics for discussion were ‘Transitions of Care’ and ‘Access’. Consumer data analysis prompted broader discussion including lived experiences. Following the workshop, a second level of content analysis pinpointed issues with implications for patient safety highlighting that consumers were astutely aware of macrolevel ‘Systems Factors’ relating to ‘Emergency Departments’ and the health system, as well as microlevel ‘Patient Factors’ (eg patient preferences and circumstances) which impact a patient's understanding during the ‘Communication’ (clinician to patient/between clinicians) of test‐results ‘Information’ (or lack thereof). Conclusions Consumers identified the challenges patients experience with test‐results management, and our findings highlight areas for potential improvement in patient safety. Patient or public contribution Ten health consumer volunteers actively participated in the test‐results management data analysis workshop conducted in this study. Two health consumers also volunteered to read and comment on the draft manuscript.


| BACKG ROU N D
It is widely recognized that missed test-results and failure to follow-up test-results are major patient safety concerns. [1][2][3] Inadequate management of diagnostic test-results can result in patient harm 2,4 or even death, 2,5 yet a study by Baylis et al 5  (selected based on test-results management system involvement) found that, in the majority of claims reviewed, the harm was avoidable. 5 Avoidable harm represents an area where patient safety can be improved and there is an abundance of research into interventions aimed at improving safety through improving test-results follow-up.
A number of systematic reviews have been undertaken to examine evidence for effective interventions to improve the follow-up of tests-results including audit and communication strategies to reduce diagnostic errors 6 ; interventions aimed at improving the follow-up of test-results pending at discharge (TPAD) 7,8 ; asynchronous laboratory results notifications 9 ; and the management of test-results using health information technology. 10 The majority of articles examined in these systematic reviews have focussed on clinician-centred strategies or interventions with only two reviews reporting studies of patient involvement in test-results follow-up, principally in relation to online access to test-results via the Internet, 7 patient portals 10 or personal health records. 10 As the recipients of diagnostic testing, patients have a vested interest in the effective management and communication of their test-results. Furthermore, it is recognized that patients requesting or reviewing results may serve as a safety net for missed test-results. [11][12][13] Patient involvement in test-results management has predominantly been researched from the perspective of patient preferences for test-result communication 11,[14][15][16] or patient experiences with accessing test-results via web/patient portals, [17][18][19][20] in academic medical centres, 15 outpatient, 14,19 primary care 11,16,19 and hospital 18 -based settings. Patient experiences with the total testing process 21 or results management 22 have been studied in primary care settings, identifying quality and safety themes 22 and potential areas for practice process improvement. 21 There is a notable deficit in literature reporting patient experiences of test-results management in emergency department (ED) settings, despite the focus on interventions to improve TPAD in this context. 7 Patient experience formed the premise of the current study which was undertaken as part of a larger project investigating test-results communication, management and follow-up. 23  The rationale, practical and strategic approach to health consumer involvement in the CRGW has been reported elsewhere. 24 The purpose of the current study was to report the outcomes and key findings from the CRGW focussing specifically on the first aim of the workshop, namely to 'Identify key health consumer perspectives and experiences based on the challenges they have faced with test-results management', with the aim of identifying areas where patient safety could potentially be improved in consumer interaction with the management of test-results.

| Context, study design and ethics
The CRGW was conducted in Sydney Australia, within the framework of a larger project investigating test-results communication, management and follow-up. 23

| Recruitment
Consumer representatives were recruited using targeted advertisements for volunteers, and the strategies underlying the targeted recruitment have been previously published 24 in detail. Postrecruitment, invitation letters including the workshop date, time, purpose, location, transport information and contact details for a member of the research team (the consumer 'co-ordinator') were mailed out. To cover engagement costs, parking/cab vouchers were offered for travel assistance to attend the workshop (in line with Health Consumers NSW recommendations 26 ).
Ten consumers (female n = 4) volunteered ranging between 40-49 and 70-79 (average = 61) years of age, including currently employed professionals and retirees. Self-reported years of consumer experience ranged from 0 to 40+ (average 9.7 years). The CRGW was held in July 2018, and five researchers (female n = 4) also attended (including all authors).

| Preparation-topic selection
Prior to the CRGW, recruited consumers were invited to select the topics for discussion at the workshop. Four topic areas related to the challenges associated with safe and effective test-results management were offered for selection namely: (a) transitions of care; (b) patient-facing care; (c) access; and (d) effect. A summary of the topic information provided to participants is presented in Appendix S1.
Participants were asked to rank the four topics in order of relative importance and submit rankings via email or anonymously via a link to an online poll. Final topic selection was determined by assigning a priority score of 1-4 (1 being highest priority) to each selection, summing the scores for each topic and then selecting the two topics with the lowest overall score.
All consumers completed the topic selection poll, and the results are presented in Appendix S2. Two respondents had 100% agreement in their rankings (Consumers 7 and 8). Based on consumers' choices, the two topics with the lowest scores, Topic 1-transitions of care (score 2.5) and Topic 3-access (score 1.7), were selected for discussion at the workshop.

| CRGW structure
The CRGW was a half-day workshop held at Macquarie University    At the completion of the CRGW, consumers were asked to complete an anonymous feedback survey (Appendix S3). Results from the survey served as an additional data source for evaluating participant feedback on the engagement process.

| Data analysis
The approach to data analysis was pragmatic and iterative. Data immersion involved three researchers (Authors 1-3) reviewing the CRGW transcripts and artefacts to produce a narrative summary report for distribution to all participants. Upon completing this analysis, it was apparent that the workshop transcripts reflected both the participants' involvement in, and the outcomes of, the analysis process with an abundance of microlevel themes. The discussions were also enriched with real-life experiences/issues evoked by the analysis process. On this basis, it was determined that a second level of analysis was warranted to fully capture the richness of the CRGW proceedings. CRGW transcripts from the combined group discussions and 'final thoughts' session were subsequently analysed using qualitative content analysis as described by Grameheim 30 to inductively derive meaning from the combined group discussion transcripts. Text was condensed and abstracted with key content presented on a purposely adapted Ishikawa diagram (Appendix S4).    And ask questions.

| Communication
Communication (Figure 3) was discussed across different levels in-

| Information
Consumers concurred that access to information (Figure 4) is required for informed decision making: …if you don't have access to your information in a timely manner, or you can't understand it or you can't take it to the place where it needs to be acted on appropriately, you can't really make the decisions appropriately or you can't follow why they made the decisions…. (BT-T2) The benefit of patient access to, and sharing of, information was also highlighted: …what happens is that access to information, if you don't have it, it's one side the GP, the hospital, the specialist, so what they end up doing is doubling up, so you're wasting, so this is where patient access to information is actually a savings, because what you're doing is making the information available….
(RT-T2) However, it was apparent that access to information was not perceived as the default despite a patient desire for access and ownership of information. Requests for information were often associated with  (YT-T1) …a lot of doctors were assuming that this goes to the GP and we know that's not always borne out, the results don't always end up in the GP…. (RT-T1) Technology was seen as a potential benefit to information access: …if you had a repository consolidating all your records that you are in charge of that you always have access, that you don't have to rely on your GP getting authorised to access that result…. (BT-T1) It should be noted that an electronic 'My Health Record' was emerging at the time of the CRGW with an opt-out period for all Australians from July to October 2018. 31

| ED factors and systems factors
Participants recognized that the ED is an environment where patients are There's not a lot of measures about outcomes and certainly not a lot that's made available….
(YT-T2) …different groups need to talk to each other and we thought standardised IT systems would help, as well as someone whose responsibility -someone in the hospital whose responsibility in the hospital is to pull it all together….

F I G U R E 5 ED Factors and Systems
(RT-T1)   17 or portal links to additional resources. 17,19 Consumer involvement in qualitative data analysis has been identified as an understudied area of research. 40 To the best of our knowledge, our study is the first to engage consumers in test-results management qualitative data analysis. The CRGW outcomes were an intertwining of issues, discussion points and personal experiences. Collating the consumers' analysis into higher level themes (from microlevel subthemes) was not achieved within the timeframe of the CRGW and represents a lesson learned for future workshops.

| D ISCUSS I ON
Upon reflection, it may have been more constructive to reduce the analysis to a single topic with greater focus on achieving thematic outcomes. However, the microlevel of thematic analysis painted a vivid picture of consumers' experiences and provided invaluable insight into the role that patients may be undertaking in acting as a safety net for missed test-results. From a methodological and analytical standpoint, the CRWG also presented innovative opportunities to include interpretative lenses outside traditional health service research and academia; not just recording the patient voice on the frontline but ensuring consumers' voices is represented in data analysis as well. 24,41,42 The collaborative analysis and identification of additional threats to quality and safety highlight the complexity of the diverse realities faced by patients. Our experiences highlight the immense potential that can be achieved through affording consumers with opportunities for active partnerships in health service research.

| Limitations
A major limitation of this study was recruitment of volunteers and as such the results are reflective of those who agreed to participate, who were consumers with experience and/or an interest in this field.
As such, it is recognized that our volunteers may not be 'truly representative of the targeted population', 43 pg. 7 that is all health-care consumers, and this may have impacted the study findings. It is acknowledged that, due to the small number of participants, minority representation was not achieved in this study 44 and our study lacked representative sampling from the <35-year age group.