Stuart W. Grande

The Psychometric Properties of CollaboRATE: A Fast and Frugal Patient-Reported Measure of the Shared Decision-Making Process

Background Patient-centered health care is a central component of current health policy agendas. Shared decision making (SDM) is considered to be the pinnacle of patient engagement and methods to promote this are becoming commonplace. However, the measurement of SDM continues to prove challenging. Reviews have highlighted the need for a patient-reported measure of SDM that is practical, valid, and reliable to assist implementation efforts. In consultation with patients, we developed CollaboRATE, a 3-item measure of the SDM process. Objective There is a need for scalable patient-reported measure of the SDM process. In the current project, we assessed the psychometric properties of CollaboRATE. Methods A representative sample of the US population were recruited online and were randomly allocated to view 1 of 6 simulated doctor-patient encounters in January 2013. Three dimensions of SDM were manipulated in the encounters: (1) explanation of the health issue, (2) elicitation of patient preferences, and (3) integration of patient preferences. Participants then completed CollaboRATE (possible scores 0-100) in addition to 2 other patient-reported measures of SDM: the 9-item Shared Decision Decision Making Questionnaire (SDM-Q-9) and the Doctor Facilitation subscale of the Patient’s Perceived Involvement in Care Scale (PICS). A subsample of participants was resurveyed between 7 and 14 days after the initial survey. We assessed CollaboRATE’s discriminative, concurrent, and divergent validity, intrarater reliability, and sensitivity to change. Results The final sample consisted of 1341 participants. CollaboRATE demonstrated discriminative validity, with a significant increase in CollaboRATE score as the number of core dimensions of SDM increased from zero (mean score: 46.0, 95% CI 42.4-49.6) to 3 (mean score 85.8, 95% CI 83.2-88.4). CollaboRATE also demonstrated concurrent validity with other measures of SDM, excellent intrarater reliability, and sensitivity to change; however, divergent validity was not demonstrated. Conclusions The fast and frugal nature of CollaboRATE lends itself to routine clinical use. Further assessment of CollaboRATE in real-world settings is required.

Naturally occurring peer support through social media: the experiences of individuals with severe mental illness using YouTube.

Increasingly, people with diverse health conditions turn to social media to share their illness experiences or seek advice from others with similar health concerns. This unstructured medium may represent a platform on which individuals with severe mental illness naturally provide and receive peer support. Peer support includes a system of mutual giving and receiving where individuals with severe mental illness can offer hope, companionship, and encouragement to others facing similar challenges. In this study we explore the phenomenon of individuals with severe mental illness uploading videos to YouTube, and posting and responding to comments as a form of naturally occurring peer support. We also consider the potential risks and benefits of self-disclosure and interacting with others on YouTube. To address these questions, we used qualitative inquiry informed by emerging techniques in online ethnography. We analyzed n = 3,044 comments posted to 19 videos uploaded by individuals who self-identified as having schizophrenia, schizoaffective disorder, or bipolar disorder. We found peer support across four themes: minimizing a sense of isolation and providing hope; finding support through peer exchange and reciprocity; sharing strategies for coping with day-to-day challenges of severe mental illness; and learning from shared experiences of medication use and seeking mental health care. These broad themes are consistent with accepted notions of peer support in severe mental illness as a voluntary process aimed at inclusion and mutual advancement through shared experience and developing a sense of community. Our data suggest that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube seem to be overlooked by those who posted comments or uploaded videos. Whether or not this platform can provide benefits for a wider community of individuals with severe mental illness remains uncertain.

Patients Covertly Recording Clinical Encounters: Threat or Opportunity? A Qualitative Analysis of Online Texts

Background The phenomenon of patients covertly recording clinical encounters has generated controversial media reports. This study aims to examine the phenomenon and analyze the underlying issues. Methods and Findings We conducted a qualitative analysis of online posts, articles, blogs, and forums (texts) discussing patients covertly recording clinical encounters. Using Google and Google Blog search engines, we identified and analyzed 62 eligible texts published in multiple countries between 2006 and 2013. Thematic analysis revealed four key themes: 1) a new behavior that elicits strong reactions, both positive and negative, 2) an erosion of trust, 3) shifting patient-clinician roles and relationships, and 4) the existence of confused and conflicting responses. When patients covertly record clinical encounters – a behavior made possible by various digital recording technologies – strong reactions are evoked among a range of stakeholders. The behavior represents one consequence of an erosion of trust between patients and clinicians, and when discovered, leads to further deterioration of trust. Confused and conflicting responses to the phenomenon by patients and clinicians highlight the need for policy guidance. Conclusions This study describes strong reactions, both positive and negative, to the phenomenon of patients covertly recording clinical encounters. The availability of smartphones capable of digital recording, and shifting attitudes to patient-clinician relationships, seems to have led to this behavior, mostly viewed as a threat by clinicians but as a welcome and helpful innovation by some patients, possibly indicating a perception of subordination and a lack of empowerment. Further examination of this tension and its implications is needed.

Using Option Grids: steps toward shared decision-making for neonatal circumcision

OBJECTIVES To assess the impact, acceptability and feasibility of a short encounter tool designed to enhance the process of shared decision-making and parental engagement. METHODS We analyzed video-recordings of clinical encounters, half undertaken before and half after a brief intervention that trained four clinicians how to use Option Grids, using an observer-based measure of shared decision-making. We also analyzed semi-structured interviews conducted with the clinicians four weeks after their exposure to the intervention. RESULTS Observer OPTION(5) scores were higher at post-intervention, with a mean of 33.9 (SD=23.5) compared to a mean of 16.1 (SD=7.1) for pre-intervention, a significant difference of 17.8 (95% CI: 2.4, 33.2). Prior to using the intervention, clinicians used a consent document to frame circumcision as a default practice. Encounters with the Option Grid conferred agency to both parents and clinicians, and facilitated shared decision-making. Clinician reported recognizing the tools positive effect on their communication process. CONCLUSIONS Tools such as Option Grids have the potential to make it easier for clinicians to achieve shared decision-making. PRACTICE IMPLICATIONS Encounter tools have the potential to change practice. More research is needed to test their feasibility in routine practice.

Narrowing the gap between organisational demands and the quest for patient involvement: The case for coordinated care pathways

To improve healthcare, we currently observe two major developments. On the one hand, there is an increasing emphasis on including the patients’ perspective, for example in treatment decision making, during development of clinical guidelines and evaluation of care delivery services. On the other hand, healthcare providers are moving towards evidence-based care and standardising operating procedures, exemplified by the development of documented coordinated care pathways. These pathways typically focus on organisational and system requirements, which usually do not refer to patient involvement, nor indicate the need to be sensitive to differing patient needs. As a result, the structured process of developing and documenting care pathways seems to be at odds with the call to personalise care around the needs and preferences of the individual patient. The purpose of this paper is to illustrate the conspicuous mismatch and show promising opportunities to address it.

Patients recording clinical encounters: a path to empowerment? Assessment by mixed methods

Objective To examine the motivations of patients recording clinical encounters, covertly or otherwise, and why some do not wish to record encounters. Design Mixed-methods analysis of survey data and nested semistructured interviews. Setting Survey to UK audience, using social media and radio broadcast. Participants 168 survey respondents, of whom 161 were 18 years of age or older (130 completions). Of the 56 participants who agreed to be contacted, we included data from 17 interviews. Results 19 (15%) respondents indicated having secretly recorded a clinical encounter and 14 (11%) were aware of someone who had secretly recorded a clinical encounter. 45 (35%) said they would consider recording secretly and 44 (34%) said they would record after asking permission. Totally, 69% of respondents indicated their desire to record clinical encounters, split equally between wanting to do so covertly or with permission. Thematic analysis of the interviews showed that most patients are motivated by the wish to replay, relisten and share the recording with others. Some are also motivated by the idea of owning a personal record, and its potential use as verification of a poor healthcare experience. The rationale for permission seeking was based on the wish to prioritise a trusting relationship with a health professional. Those who preferred to record covertly described a pre-existing lack of trust, a fear that recording would be denied, and a concern that an affronted clinician would deny them access to future care. There was a general wish that recording should be facilitated. Conclusions Patients’ prime motivation for recording is to enhance their experience of care, and to share it with others. Patients know that recording challenges the ‘ceremonial order of the clinic’, and so some decide to act covertly. Patients wanted clearer, more permissive policies to be developed.

Physicians as Part of the Solution? Community-Based Participatory Research as a Way to Get Shared Decision Making into Practice

Although support among policy makers and academics for the wide scale adoption of shared decision making (SDM) is growing, actual implementation is slow, and faces many challenges. Extensive systemic barriers exist that prevent physicians from being able to champion SDM and lead practice change. In other areas of public health where implementation has been a challenge, community-based participatory research (CBPR) has effectively engaged resistant stakeholders to improve practice and the delivery of care. Might CBPR, defined broadly as research that engages participants in the conception, design, and implementation of relevant health programs, be a more effective way to engage physicians, patients, and managers in the implementation process? Consequently, we argue that adopting a participatory approach may help to overcome recognized barriers to progress in this area.ABSTRACTAlthough support among policy makers and academics for the wide scale adoption of shared decision making (SDM) is growing, actual implementation is slow, and faces many challenges. Extensive systemic barriers exist that prevent physicians from being able to champion SDM and lead practice change. In other areas of public health where implementation has been a challenge, community-based participatory research (CBPR) has effectively engaged resistant stakeholders to improve practice and the delivery of care. Might CBPR, defined broadly as research that engages participants in the conception, design, and implementation of relevant health programs, be a more effective way to engage physicians, patients, and managers in the implementation process? Consequently, we argue that adopting a participatory approach may help to overcome recognized barriers to progress in this area.

‘Much clearer with pictures’: using community-based participatory research to design and test a Picture Option Grid for underserved patients with breast cancer

Objective Women of low socioeconomic status (SES) diagnosed with early stage breast cancer experience decision-making, treatment and outcome disparities. Evidence suggests that decision aids can benefit underserved patients, when tailored to their needs. Our aim was to develop and test the usability, acceptability and accessibility of a pictorial encounter decision aid targeted at women of low SES diagnosed with early stage breast cancer. Design Community-based participatory research (CBPR) using think-aloud protocols (phases 1 and 2) and semistructured interviews (phase 3). Setting Underserved community settings (eg, knitting groups, bingo halls, senior centres) and breast clinics. Participants In phase 1, we recruited a convenience sample of clinicians and academics. In phase 2, we targeted women over 40 years of age, of low SES, regardless of breast cancer history, and in phase 3, women of low SES, recently diagnosed with breast cancer. Intervention The pictorial encounter decision aid was derived from an evidence-based table comparing treatment options for breast cancer (http://www.optiongrid.org). Outcome measures We assessed the usability, acceptability and accessibility of the pictorial decision aid prototypes using the think-aloud protocol and semistructured interviews. Results After initial testing of the first prototype with 18 academics and health professionals, new versions were developed and tested with 53 lay individuals in community settings. Usability was high. In response to feedback indicating that the use of cartoon characters was considered insensitive, a picture-only version was developed and tested with 23 lay people in phase 2, and 10 target users in phase 3. Conclusions and relevance Using CBPR methods and iterative user testing cycles improved usability and accessibility, and led to the development of the Picture Option Grid, entirely guided by multiple stakeholder feedback. All women of low SES recently diagnosed with early stage breast cancer found the Picture Option Grid usable, acceptable and accessible.

A Brotherhood Perspective: How African American Male Relationships May Improve Trust and Utilization of Health Care

The objective of this research was to explore interview data to understand and characterize the nature of brotherhood in a sample of African American men at two historically Black colleges and universities. The authors used thematic analysis on semistructured interview data, collected by an ethnically diverse research team. Recruitment and interviews were conducted at two historically Black colleges and universities in Texas. Twenty African American men, 18 to 35 years old, were randomly selected from 62 recruited participants. Five categories framed brotherhood and health care utilization: (a) trust lessens individual barriers to action, (b) identity unites men through a process of authentication, (c) generations lead by example, (d) approaching life as a shared learning experience, and (e) social pressure and ridicule uphold collective action. Findings suggest that participants trust a group view, identify with the collective, and respond to social pressure to conform; therefore, brotherhood acts as a support mechanism, and its validation influences individual-level engagement and nonengagement.

Comparing the ability of OPTION12 and OPTION5 to assess shared decision-making in genetic counselling.

OBJECTIVES OPTION(12) is the most widely used tool to measure shared decision-making (SDM) in health care. A newer scale, OPTION(5), has been proposed as a more parsimonious measure that better addresses core concepts of SDM. This study compares OPTION(5) to OPTION(12) in prenatal genetic counselling. METHODS Two raters independently used OPTION(12) and OPTION(5) to score 27 clinical encounters between genetic counsellors (GC) and women with pregnancies at increased risk for genetic conditions. Global and item scores on the two instruments were compared to test concurrent validity and to identify usability in this context. Inter-rater reliability was also assessed for both instruments. RESULTS Mean scores for OPTION(12) were 43.8 (SD=9.7), and for OPTION(5) were=60.6 (SD=12.5). The correlation between OPTION(12) and OPTION(5) scores was r=0.70. Inter-rater reliability was 0.70 and 0.85 for OPTION(12) and OPTION(5) respectively, however mean inter-rater reliability for individual items was 0.31 and 0.63 for OPTION(12) and OPTION(5) respectively. CONCLUSIONS GCs exhibit SDM as measured by both OPTION instruments. OPTION(5) exhibits improved psychometric performance relative to OPTION(12), and more specifically targets the core constructs of SDM. However, refinement of OPTION instruments or manuals is needed to improve reliability and validity in GC assessment.