Meghan Halley

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.

Redefining Risk and Benefit Understanding the Decision to Undergo Contralateral Prophylactic Mastectomy

Rates of contralateral prophylactic mastectomy (CPM) among unilateral breast cancer patients are rapidly increasing; however, there are little data documenting the decision-making process of patients with no known BRCA mutations, who elect this more aggressive treatment. We conducted semistructured interviews with nine newly diagnosed patients who elected CPM over other surgical options. Using grounded theory, we analyzed interview data to identify influential decision-making factors by prevalence and intensity across participants. Decision-making factors included subjective evaluations of risk and benefit, avoidance of future breast cancer surveillance and accompanying worry, and desire to maintain (or improve) breast appearance. Based solely on survival benefit, the decision to undergo CPM might be viewed as unnecessary or even misguided. However, our findings show the importance of psychosocial factors in patients’ assessments of risk and benefit, and support the need for additional patient–provider communication regarding these factors.

Shared clinician-patient decision-making about treatment of pediatric asthma: what do we know and how can we use it?

Purpose of reviewShared decision-making (SDM) is an emerging field that promises to improve healthcare. We aim to explore the concept of SDM, how it has been studied or applied in the treatment of asthma, and how it might be implemented to improve adherence and outcomes in pediatric asthma. Recent findingsHealthcare providers often fail to involve their patients in clinical decision-making by not presenting all available options, associated risks and benefits, in light of the patients values, preferences, concerns, lifestyle, and perceived barriers to following various treatment regimens. It has been argued that SDM is preferable to a clinician-controlled approach and may improve patient outcomes (increase satisfaction with care, reduce decisional conflict and decisional regret, improve health-related quality of life, and increase decision-specific knowledge). This may be especially important in managing chronic conditions in which adherence to treatment regimen may increase if the patient was actively involved in the decision-making. In pediatrics, the decision process is further complicated by the clinician–parent(s)–child interaction. We found no studies on how to effectively involve and communicate with children at different developmental levels, or how to coalesce the parent and childs perspective to work as a unit. SummarySDM has the promise to improve satisfaction with disease management, treatment adherence and patient-centered outcomes in pediatric asthma, but further research is needed to determine its effectiveness and to establish guidelines on how to implement SDM in the clinical setting and incorporate the input and preferences of all stakeholders’ perspectives.

A conceptual model of the multiple stages of communication necessary to support patient-centered care.

Patient-centered care requires that both healthcare providers and patients have access to comparative effectiveness research (CER), which provides direct comparisons of the risks and benefits of available clinical options. However, insufficient attention has been paid to developing the comprehensive communication systems necessary to ensure that CER reaches patients and healthcare providers. In this review, we propose a model of the multiple stages of CER communication necessary for patient-centered care and review the existing research and gaps in knowledge relevant to each stage. These stages include: promotion of the underlying concepts and value of CER; translation of CER results; dissemination of CER results; and utilization of the results of CER in shared decision-making between patients and providers. A comprehensive approach to CER communication is necessary to ensure that the growing interest in and availability of CER is able to support a more patient-centered model of healthcare.

The Importance Of Integrating Narrative Into Health Care Decision Making

When making health care decisions, patients and consumers use data but also gather stories from family and friends. When advising patients, clinicians consult the medical evidence but also use professional judgment. These stories and judgments, as well as other forms of narrative, shape decision making but remain poorly understood. Furthermore, qualitative research methods to examine narrative are rarely included in health science research. We illustrate how narratives shape decision making and explain why it is difficult but necessary to integrate qualitative research on narrative into the health sciences. We draw on social-scientific insights on rigorous qualitative research and our ongoing studies of decision making by patients with cancer, and we describe new tools and approaches that link qualitative research findings with the predominantly quantitative health science scholarship. Finally, we highlight the benefits of more fully integrating qualitative research and narrative analysis into the medical evidence base and into evidence-based medical practice.

Mapping the Decision-Making Process for Adjuvant Endocrine Therapy for Breast Cancer: The Role of Decisional Resolve

Background. Studies show adjuvant endocrine therapy increases survival and decreases risk of breast cancer recurrence for hormone receptor–positive tumors. Yet studies also suggest that adherence rates among women taking this therapy may be as low as 50% owing largely to adverse side effects. Despite these rates, research on longitudinal patient decision making regarding this therapy is scant. Objective. We sought to map the decision-making process for women considering and initiating adjuvant endocrine therapy, paying particular attention to patterns of uncertainty and decisional change over time. Methods. A longitudinal series of semistructured interviews conducted at a multispecialty health care organization in Northern California with 35 newly diagnosed patients eligible for adjuvant endocrine therapy were analyzed. Analysis led to the identification and indexing of 3 new decision-making constructs—decisional phase, decisional direction, and decisional resolve—which were then organized using a visual matrix and examined for patterns characterizing the decision-making process. Results. Our data reveal that most patients do not make a single, discrete decision to take or not take hormone therapy but rather traverse multiple decisional states, characterized by 1) phase, 2) direction, and 3) strength of resolve. Our analysis tracks these decisional states longitudinally using a grayscale-coded matrix. Our data show that decisional resolve wavers not just when considering therapy, as the existing concept of decisional conflict suggests, but even after initiating it, which may signal future decisions to forgo therapy. Conclusions. Adjuvant endocrine therapy, like other chronic care decisions, has a longer decision-making process and implementation period. Thus, theoretical, empirical, and clinical approaches should consider further exploring the new concept and measurement of decisional resolve, as it may help to improve subsequent medication adherence.

Implementation of Patient Decision Support Interventions in Primary Care: The Role of Relational Coordination.

Background. The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. Methods. Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. Results. Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic’s performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. Limitations. Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. Conclusions. These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.

An exploratory mixed‐methods crossover study comparing DVD‐ vs. Web‐based patient decision support in three conditions: The importance of patient perspectives

The last 15 years have witnessed considerable progress in the development of decision support interventions (DESIs). However, fundamental questions about design and format of delivery remain.

Health Disparities as They Relate to Medication Adherence

Nonadherence to medical treatment recommendations is associated with poor health outcomes in chronic respiratory diseases. Chapter 6 reviews reported rates of medication nonadherence in respiratory disease, disparities in adherence in vulnerable populations that may contribute to their relatively worse respiratory disease outcomes, and potential causes of nonadherence, including characteristics of the health care system, patient–physician relationship/communication, the disease, and the treatment regimen. Multiple systematic reviews and meta-analyses of the effectiveness of interventions to improve adherence and outcomes report positive but inconsistent evidence of their effectiveness, including in vulnerable populations. Despite their design strengths, studies selected for such reviews typically have not confirmed the disease diagnosis, not targeted the appropriate population (those with poor disease control and poor adherence), and/or not ensured that participants’ treatment regimens were appropriate. This suggests a need to address these issues more appropriately in future intervention research, especially in vulnerable populations.

PS1-10: How Can the Same Practice Be Classified as Having 2 and 900 MDs? NAMCS Data Collection in a Changing Ambulatory Care Environment

Background/Aims Since 1973, the National Ambulatory Medical Care Survey (NAMCS), administered by the National Center for Health Statistics (NCHS) has been widely used in studies of ambulatory care. With the growth in large multispecialty practices – including many members of the HMORN – there is a need to understand how NAMCS data are collected and whether current processes yield accurate and reliable data. NAMCS collects data from physicians about their practices and abstracts a sample of patient visit records. This study reports on the physician component. Methods In collaboration with NCHS, nine physicians were randomly sampled from a multispecialty clinic using standard NAMCS recruitment procedures; eight physicians were eligible and agreed to participate. Using their standard protocols, three Field Representatives (FRs) conducted NAMCS physician interviews while a trained ethnographer (MH, KR) observed and audio-recorded each interview. Transcripts and field notes were analyzed using a grounded theory approach to identify key themes. Results Data have been collected and analyzed. They are currently undergoing standard confidentiality review by NCHS. However, this process has been delayed due to the government shutdown. We fully anticipate that results will be released in time for presentation at the HMORN conference. Conclusions Though we are precluded from disseminating results at this time, we will provide a full report of our results in our HMORN conference presentation.