Listening in on difficult conversations: an observational, multi-center investigation of real-time conversations in medical oncology

BACKGROUND: The quality of communication in medical care has been shown to influence health outcomes. Cancer patients, a highly diverse population, communicate with their clinical care team in diverse ways over the course of their care trajectory. Whether that communication happens and how effective it is may relate to a variety of factors including the type of cancer and the patient’s position on the cancer care continuum. Yet, many of the routine needs of cancer patients after initial cancer treatment are often not addressed adequately. Our goal is to identify areas of strength and areas for improvement in cancer communication by investigating real-time cancer consultations in a cross section of patient-clinician interactions at diverse study sites. METHODS/DESIGN: In this paper we describe the rationale and approach for an ongoing observational study involving three institutions that will utilize quantitative and qualitative methods and employ a short-term longitudinal, prospective follow-up component to investigate decision-making, key topics, and clinician-patient-companion communication dynamics in clinical oncology. DISCUSSION: Through a comprehensive, real-time approach, we hope to provide the fundamental groundwork from which to promote improved patient-centered communication in cancer care

Global knowledge encounter : a sociological analysis of the introduction of genetically modified seed in Warangal, India

The paper argues that the diffusion of global knowledge systems such as biotechnology is neither neutral nor banal. It traces the route of seed agents and the social construction of genetically modified (GM) crops. In Warangal district, approximately one thousand agricultural input merchants and their social networks cover almost all of the 1,015 Gram panchayats (village councils). The unintended consequences of the adoption of new seed are cruel – narrowing of foodstuffs produced, loss of local knowledge, the further social devaluing of women, and the reinforcement of patriarchy and the market

Technological paradigm shift and agricultural sustainability : the case of genetically modified cotton in Warangal District, India

The research focuses on the adoption of new technologies and biotechnologies along with implications for the metabolic relationship between nature and agricultural producers, and the sustainability of agriculture. It focuses on the spread of GM cotton seeds in the Warangal district of Andhra Pradesh in southern India as a case study. Research findings demonstrate that social and cultural factors are crucial in the adoption of GM seeds, that issues such as trust and caste allegiance play a part, that aggressive marketing strategies such as demonstration plots are not neutral, often reinforcing patriarchal regimes

Grounding global seeds : a contextual comparison of the politico-ecological implications of genetically modified crops for farming communities in Alberta (Canada) and Andhra Pradesh (India)

Thesis, University of Alberta, 2010The adoption of GM canola in Alberta and GM cotton in Andhra Pradesh are used as comparative case studies. The dissertation analyzes and compares socioecological implications of the adoption of genetically modified (GM) seeds and alternative agroecological farming methods for farming communities in Alberta, Canada and Andhra Pradesh, India – localities situated in contrasting geopolitical, socio-cultural, and structural-institutional contexts in the global economy. The paper examines social and cultural aspects of farmer decision-making in the adoption of new seed technology, farmer receptivity to new cropping methods, knowledge translation between laboratory and farmer, and the impact of global knowledge-based technology on local knowledge systems

The Agri-food Sector's Response to the Triple Crisis: Sustaining local social initiatives in Andhra Pradesh, India

While global capital uses various mechanisms to control and govern the agri-food system, counter-movements have been rising with self-protecting measures against the intrusion of the market system and development. Ashok Kumbamu critically examines this ‘double movement’ in the agri-food sector at a time of convergence of three global crises of food, energy, and climate. He looks at the organizational strategies and alternative development initiatives of the Deccan Development Society in southern India.

Patient and Provider Perspectives on a Decision Aid for Familial Hypercholesterolemia

Familial Hypercholesterolemia (FH) is an inherited disorder associated with increased cardiovascular risk that requires patients to make multiple impactful decisions regarding the management of their condition. Patient decision aids (PDAs) can facilitate shared decision-making (SDM) and enable patients to make choices that are concordant with their goals and values. To inform the development of a PDA for patients with FH, we employed a qualitative inductive approach and focus group discussions with patients, physicians, and genetic counselors. We explored and analyzed the perceptions and understanding of these stakeholders related to a PDA for FH and identified important concepts to include in the PDA. Categories emerging from focus group discussions included: (a) perceptions of a PDA related to FH; (b) discussion about the content of a PDA related to FH; and (c) SDM. In general, stakeholders were in favor of developing tools which can inform and individualize discussion about genetic testing and treatment options for FH. Physicians valued a tool that facilitates knowledge transfer to FH patients. Patients desired a tool to help them understand the genetic aspects of and treatment options related to FH. Genetic counselors emphasized the inclusion of visual aids to support discussion with patients. Potential barriers to and facilitators of PDA implementation were identified. The input of various stakeholders will inform the development of a prototype tool that will be iteratively tested before implementation in the clinical setting

Evaluating the Process of Online Health Information Searching: A Qualitative Approach to Exploring Consumer Perspectives

Background: The Internet is a common resource that patients and consumers use to access health-related information. Multiple practical, cultural, and socioeconomic factors influence why, when, and how people utilize this tool. Improving the delivery of health-related information necessitates a thorough understanding of users’ searching-related needs, preferences, and experiences. Although a wide body of quantitative research examining search behavior exists, qualitative approaches have been under-utilized and provide unique perspectives that may prove useful in improving the delivery of health information over the Internet. Objective: We conducted this study to gain a deeper understanding of online health-searching behavior in order to inform future developments of personalizing information searching and content delivery. Methods: We completed three focus groups with adult residents of Olmsted County, Minnesota, which explored perceptions of online health information searching. Participants were recruited through flyers and classifieds advertisements posted throughout the community. We audio-recorded and transcribed all focus groups, and analyzed data using standard qualitative methods. Results: Almost all participants reported using the Internet to gather health information. They described a common experience of searching, filtering, and comparing results in order to obtain information relevant to their intended search target. Information saturation and fatigue were cited as main reasons for terminating searching. This information was often used as a resource to enhance their interactions with health care providers. Conclusions: Many participants viewed the Internet as a valuable tool for finding health information in order to support their existing health care resources. Although the Internet is a preferred source of health information, challenges persist in streamlining the search process. Content providers should continue to develop new strategies and technologies aimed at accommodating diverse populations, vocabularies, and health information needs

Patients' views on incidental findings from clinical exome sequencing

This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding which types of results they would like returned to them. Responses indicate a diversity of attitudes toward the return of incidental findings and a diversity of justifications for those attitudes. The majority of participants also described an imperative to include the patient in deciding which results to return rather than having universal, predetermined rules governing results disclosure. The results demonstrate the importance of a patient centered-approach to returning incidental findings

A Clinical Decision Support Tool for Familial Hypercholesterolemia Based on Physician Input

Objective: To develop clinical decision support (CDS) for familial hypercholesterolemia (FH), based on physician input obtained by a mixed methods approach. Introduction: Awareness, detection, and control of FH—a relatively common genetic disorder—is low. Clinical decision support could address knowledge gaps and provide point-of-care guidance for the management of FH. Methods: A 16-question survey that assessed familiarity with FH and sought input on potential content of the CDS tool was emailed to 1161 clinicians including 208 cardiologists. In addition, 4 physician focus groups were held to gather input on the structure and form of the CDS tool. This study took place between September 12, 2016, and January 16, 2017. Results: The response rate to the survey was 18.1%. Clinicians were overwhelmingly (97.6%) in favor of a CDS tool that assists in managing patients with FH at the point of care and this was confirmed in the focus group discussions. Key themes emerged during the focus groups including providers' knowledge and understanding of FH, facilitators and barriers to implementing a CDS tool, and suggestions for its design and content. Conclusion: Clinicians were supportive of development of a CDS tool to assist with the evaluation and treatment of FH and provided feedback related to the design and implementation of such a tool