JMIR Publications

Recent Articles:

• Evidence: Original Papers

  Dec 6, 2018

  Spanish-Speaking Hispanic Patients’ Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study

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  Authors List:

  • Marge Benham-Hutchins  
  • Sharon A Brown  
  • Erin E Donovan  
  • Henry Guevara  
  • Alisha H Johnson  

  Abstract:

  Background: Self-management of chronic conditions, such as cancer or diabetes, requires the coordination of care across multiple care settings. Current patient-centered, hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and play an active role in self-management. Objective: This study aimed to elicit Spanish-speaking Hispanic patients’ perspectives on the exchange and sharing of information during hospitalization. Methods: This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization. Results: Participants preferred paper-based Spanish language medical information. Doctors and nurses were key information providers and communicated with participants verbally, usually with the assistance of a translator. Participants expressed a desire to be informed about medication and treatments, including side effects and why there were changes in medication during hospitalization. In addition, they expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s). Conclusions: Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Nevertheless, future research on the influence of emotional readiness on the timing of medical information is needed.

  • J Participat Med 2018;10(4):e10782

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  Evidence: Original Papers

  Nov 22, 2018

  The Impact of Visualization Format and Navigational Options on Laypeople’s Perception and Preference of Surgery Information Videos: Randomized Controlled...

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  Authors List:

  • Marie Eggeling  
  • Martina Bientzle  
  • Thomas Shiozawa  
  • Ulrike Cress  
  • Joachim Kimmerle  

  Abstract:

  Background: Patients need to be educated about possible treatment choices in order to make informed medical decisions. As most patients are medical laypeople, they find it difficult to understand complex medical information sufficiently to feel confident about a decision. Multimedia interventions such as videos are increasingly used to supplement personal consultations with medical professionals. Former research has shown that such interventions may have a positive effect on understanding, decision making, and emotional reactions. However, it is thus far unclear how different features of videos influence these outcomes. Objective: We aimed to examine the impact of visualization formats and basic navigational options in medical information videos about cruciate ligament surgery on recipients’ knowledge gain, emotions, attitude, and hypothetical decision-making ability. Methods: In a between-group randomized experiment (Study 1), 151 participants watched 1 of 4 videos (schematic vs realistic visualization; available vs unavailable navigational options). In a separate online survey (Study 2), 110 participants indicated their preference for a video design. All participants were medical laypeople without personal experience with a cruciate ligament rupture and were presented with a fictional decision situation. Results: In Study 1, participants who used navigational options (n=36) gained significantly more factual knowledge (P=.005) and procedural knowledge (P<.001) than participants who did not have or use navigational options (n=115). A realistic visualization induced more fear (P=.001) and disgust (P<.001) than a schematic video. Attitude toward the surgery (P=.02) and certainty regarding the decision for or against surgery (P<.001) were significantly more positive after watching the video than before watching the video. Participants who watched a schematic video rated the video significantly higher than that by participants who watched a realistic video (P<.001). There were no significant group differences with regard to hypothetical decision making and attitude toward the intervention. In addition, we did not identify any influence of the visualization format on knowledge acquisition. In Study 2, 58 of 110 participants (52.7%) indicated that they would prefer a schematic visualization, 26 (23.6%) preferred a realistic visualization, 17 (15.5%) wanted either visualization, and 9 (8.2%) did not want to watch a video at all. Of the participants who wanted to watch a video, 91 (90.1%) preferred to have navigational options, 3 (3.0%) preferred not to have navigational options, and 7 (6.9%) did not mind the options. Conclusion: Our study indicates that the perception of medical information videos is influenced by their design. Schematic videos with navigational options are the most helpful among all videos to avoid negative emotions and support knowledge acquisition when informing patients about an intervention. The visualization format and navigational options are important features that should be considered when designing medical videos for patient education. Trial Registration: Deutsches Register Klinischer Studien DRKS00016003; https://www.drks.de/drks_web/ navigate.do?navigationId= trial.HTML&TRIAL_ID=DRKS00016003 (Archived by WebCite at http://www.webcitation.org/746ASSAhN)

  • J Participat Med 2018;10(4):e12338

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  Evidence: Original Papers

  Nov 21, 2018

  Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study

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  Authors List:

  • Graham George Macdonald  
  • Cheryl Koehn  
  • Gail Attara  
  • Allan Stordy  
  • Marilee Allerdings  
  • Jenny Leese  
  • Linda C Li  
  • Catherine L Backman  

  Abstract:

  Background: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients’ experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. Objective: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. Methods: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants’ written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. Results: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. Conclusions: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.

  • J Participat Med 2018;10(4):e10815

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  Evidence: Original Papers (not grant...

  Nov 12, 2018

  Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts’ and Citizen-Patients’ Perspectives

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  Authors List:

  • Hassane Alami  
  • Marie-Pierre Gagnon  
  • Jean-Paul Fortin  

  Abstract:

  Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually nonexistent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts and the needs and expectations of populations in decisions about telehealth services. Objective: This study aimed to explore the perception of various stakeholders (decision makers, telehealth program and policy managers, clinicians, researchers, evaluators, and citizen-patients) regarding the involvement of citizen-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles, and challenges it raises for decision making. Methods: We used a qualitative research approach based on semistructured individual interviews, with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase the capacity for interpretation and analysis, we were guided by the principle of data triangulation. Results: Citizen-patient involvement in decision making is perceived more as a theoretical idea than as a practical reality in health care organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision making and make it more pragmatic within an innovation-driven health system. This involvement could also make citizen-patients ambassadors and promoters of telehealth and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the citizen-patient, who should be involved and how, claimant citizen-patient, the risk of professionalization of citizen-patient involvement, and the gap between decision time versus time to involve the citizen-patient. Conclusions: This study provides a basis for future research on the potential of involving citizen-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision making in the health sector, particularly in the field of technology development, are needed.

  • J Participat Med 2018;10(4):e10665

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  Evidence: Original Papers

  Sep 10, 2018

  Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental...

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  Authors List:

  • Stephanie E Hullmann  
  • Stacy A Keller  
  • Dustin O Lynch  
  • Kelli Jenkins  
  • Courtney Moore  
  • Brandon Cockrum  
  • Sarah E Wiehe  
  • Aaron E Carroll  
  • William E Bennett Jr  

  Abstract:

  Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential for effective treatment of a wide variety of functional gastrointestinal disorders. Objective: The objective of our study was to determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. Methods: We augmented standard qualitative group session methods with patient-centered design methods to assess patient and parent preferences. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: Overall, 11 families (11 patients and 14 parents) participated in 2 group sessions. Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients’ primary concerns were for the privacy and confidentiality of their screening results. Patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. Conclusions: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office.

  • J Participat Med 2018;10(3):e10655

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  Evidence: Original Papers

  Jul 24, 2018

  Content-Sensitive Characterization of Peer Interactions of Highly Engaged Users in an Online Community for Smoking Cessation: Mixed-Methods Approach for...

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  Authors List:

  • Sahiti Myneni  
  • Vishnupriya Sridharan  
  • Nathan Cobb  
  • Trevor Cohen  

  Abstract:

  Background: Online communities provide affordable venues for behavior change. However, active user engagement holds the key to the success of these platforms. In order to enhance user engagement and in turn, health outcomes, it is essential to offer targeted interventional and informational support. Objective: In this paper, we describe a content plus frequency framework to enable the characterization of highly engaged users in online communities and study theoretical techniques employed by these users through analysis of exchanged communication. Methods: We applied the proposed methodology for analysis of peer interactions within QuitNet, an online community for smoking cessation. Firstly, we identified 144 highly engaged users based on communication frequency within QuitNet over a period of 16 years. Secondly, we used the taxonomy of behavior change techniques, text analysis methods from distributional semantics, machine learning, and sentiment analysis to assign theory-driven labels to content. Finally, we extracted content-specific insights from peer interactions (n=159,483 messages) among highly engaged QuitNet users. Results: Studying user engagement using our proposed framework led to the definition of 3 user categories—conversation initiators, conversation attractors, and frequent posters. Specific behavior change techniques employed by top tier users (threshold set at top 3) within these 3 user groups were found to be goal setting, social support, rewards and threat, and comparison of outcomes. Engagement-specific trends within sentiment manifestations were also identified. Conclusions: Use of content-inclusive analytics has offered deep insight into specific behavior change techniques employed by highly engaged users within QuitNet. Implications for personalization and active user engagement are discussed.

  • J Participat Med 2018;10(3):e9

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  Evidence: Original Papers

  May 14, 2018

  A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether):...

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  Authors List:

  • Melissa Basile  
  • Johanna Andrews  
  • Sonia Jacome  
  • Meng Zhang  
  • Andrzej Kozikowski  
  • Negin Hajizadeh  

  Abstract:

  Background: Severe Chronic Obstructive Pulmonary Disease patients are often unprepared to make decisions about accepting intubation for respiratory failure. We developed a Web-based decision aid, InformedTogether, to facilitate severe Chronic Obstructive Pulmonary Disease patients’ preparation for decision making about whether to accept invasive mechanical ventilation for respiratory failure. Objective: We describe feasibility testing of the InformedTogether decision aid. Methods: Mixed methods, pre- and postintervention feasibility study in outpatient pulmonary and geriatric clinics. Clinicians used InformedTogether with severe Chronic Obstructive Pulmonary Disease patients. Patient-participants completed pre- and postassessments about InformedTogether use. The outcomes measured were the following: feasibility/acceptability, communication (Combined Outcome Measure for Risk Communication [COMRADE], Medical Communication Competency Scale [MCCS], Observing Patient Involvement [OPTION] scales), and effectiveness of InformedTogether on changing patients' knowledge, Decisional Conflict Scale, and motivation. Results: We enrolled 11 clinicians and 38 Chronic Obstructive Pulmonary Disease patients at six sites. Feasibility/acceptability: Clinicians and patients gave positive responses to acceptability questions (mean 74.1/89 max [SD 7.24] and mean 59.63/61 [SD 4.49], respectively). Communication: 96% of clinicians stated InformedTogether improved communication (modified MCCS mean 44.54/49 [SD 2.97]; mean OPTION score 32.03/48 [SD 9.27]; mean COMRADE Satisfaction 4.31/5.0 [SD 0.58]; and COMRADE Confidence 4.18/5.0 [SD 0.56]). Preference: Eighty percent of patients discussed preferences with their surrogates by 1-month. Effectiveness: Knowledge scores increased significantly after using InformedTogether (mean difference 3.61 [SD 3. 44], P=.001) and Decisional Conflict decreased (mean difference Decisional Conflict Scale pre/post -13.76 [SD 20.39], P=.006). Motivation increased after viewing the decision aid. Conclusions: InformedTogether supports high-quality communication and shared decision making among Chronic Obstructive Pulmonary Disease patients, clinicians, and surrogates. The increased knowledge and opportunity to deliberate and discuss treatment choices after using InformedTogether should lead to improved decision making at the time of critical illness.

  • J Participat Med 2018;10(2):e7

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  Evidence: Original Papers

  May 10, 2018

  Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and...

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  Authors List:

  • Tamara S Hannon  
  • Courtney M Moore  
  • Erika R Cheng  
  • Dustin O Lynch  
  • Lisa G Yazel-Smith  
  • Gina EM Claxton  
  • Aaron E Carroll  
  • Sarah E Wiehe  

  Abstract:

  Background: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents’ thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process. Objective: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board. Methods: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution’s Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2. Results: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting. Conclusions: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus.

  • J Participat Med 2018;10(2):e8

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  Opinion: Viewpoints, Columns,...

  Apr 4, 2018

  Utilizing Consumer Technology (Apple’s ResearchKit) for Medical Studies by Patients and Researchers: Proof of Concept of the Novel Platform REach

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  Authors List:

  • Marleen MHJ van Gelder  
  • Lucien JLPG Engelen  
  • Thijs Sondag  
  • Tom H van de Belt  

  Abstract:

  Medical research suffers from declining response rates, hampering the quest for answers to clinically relevant research questions. Furthermore, objective data on a number of important study variables, such as physical activity, sleep, and nutrition, are difficult to collect with the traditional methods of data collection. Reassuringly, current technological developments could overcome these limitations. In addition, they may enable research being established by patients themselves provided that they have access to a user-friendly platform. Using the features of Apple's ResearchKit, an informed consent procedure, questionnaire, linkage with HealthKit data, and “active tasks” may be administered through a publicly available app. However, ResearchKit requires programming skills, which many patients and researchers lack. Therefore, we developed a platform (REach) with drag and drop functionalities producing a ready-to-use code that can be embedded in existing or new apps. Participants in the pilot study were very satisfied with data collection through REach and measurement error was minimal. In the era of declining participation rates in observational studies and patient involvement, new methods of data collection, such as REach, are essential to ensure that clinically relevant research questions are validly answered. Due to linkage with HealthKit and active tasks, objective health data that are impossible to collect with the traditional methods of data collection can easily be collected.

  • J Participat Med 2018;10(2):e6

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  Opinion: Viewpoints, Columns,...

  Feb 1, 2018

  Patient and Family Involvement: A Discussion of Co-Led Redesign of Healthcare Services

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  Authors List:

  • Sarah Jane Prior  
  • Steven Campbell  

  Abstract:

  The involvement of patients and their families in the redesign of healthcare services is an important option in providing a service that addresses the patients’ needs and improves health outcomes. However, it is a resource-intensive approach, and it is currently not clear when it should be used, and what should be the reasoning behind this decision. Some health systems of international standing have created a patient engagement program as a selling point. This paper discusses how co-led redesign can be beneficial in improving health service and more effectively engaging patients. Potential barriers for patient involvement are discussed. Patient involvement can be integrated into the health system at three main levels of engagement: direct care, organizational design and governance, and policy-making. The aim of this paper is to describe how co-led redesign is compatible with different levels of patient involvement and to address the challenges in delivering a co-led redesign in healthcare. Co-led redesign not only involves the collection of quantitative data for assessing the current systems but also the collection of qualitative data through patient, family, and staff interviews to determine the barriers to patient satisfaction. Co-led redesign is a resource-rich process that requires expertise in data collection and a clinical group that is devoted to implementing recommended changes. Currently, a number of countries have utilized co-led redesign for many different types of healthcare services. Resource availability and cost, process time, and lack of outcome measures are three major limiting factors.

  • J Participat Med 2018;10(1):e5

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  Evidence: Original Papers (not grant...

  Jan 30, 2018

  Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions

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  Authors List:

  • Sara Huston Katsanis  
  • Mollie A Minear  
  • Azita Sadeghpour  
  • Heidi Cope  
  • Yezmin Perilla  
  • Robert Cook-Deegan  
  • Duke Task Force For Neonatal Genomics
  • Nicholas Katsanis  
  • Erica E Davis  
  • Misha Angrist  

  Abstract:

  Background: Unlike aggregate research on groups of participants with a particular disorder, genomic research on discrete families’ rare conditions could result in data of use to families, their healthcare, as well as generating knowledge on the human genome. Objective: In a study of families seeking to rule in/out genetic causes for their children’s medical conditions via exome sequencing, we solicited their views on the importance of genomic information. Our aim was to learn the interests of parents in seeking genomic research data and to gauge their responsiveness and engagement with the research team. Methods: At enrollment, we offered participants options in the consent form for receiving potentially clinically relevant research results. We also offered an option of being a “partner” versus a “traditional” participant; partners could be re-contacted for research and study activities. We invited adult partners to complete a pre-exome survey, attend annual family forums, and participate in other inter-family interaction opportunities. Results: Of the 385 adults enrolled, 79% opted for “partnership” with the research team. Nearly all (99.2%) participants opted to receive research results pertaining to their children’s primary conditions. A majority indicated the desire to receive additional clinically relevant outside the scope of their children’s conditions (92.7%) and an interest in non-clinically relevant genetic information (82.7%). Conclusions: Most participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants—both partners and traditional—expected to receive all genetic information resulting from the research study.

  • J Participat Med 2018;10(1):e2

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  Evidence: Original Papers

  Jan 22, 2018

  Patient Experiences in a Linguistically Diverse Safety Net Primary Care Setting: Qualitative Study

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  Authors List:

  • Rachel L Berkowitz  
  • Nimeka Phillip  
  • Lyn Berry  
  • Irene H Yen  

  Abstract:

  Background: The patient-centered medical home model intends to improve patient experience and primary care quality. Within an urban safety net setting in Northern California, United States, these desired outcomes are complicated by both the diversity of the patient community and the care continuity implications of a residency program. Objective: The objective of our study was to understand the patient experience beyond standardized satisfaction measures. Methods: We conducted a qualitative study, interviewing 19 patients from the clinic (English-, Spanish-, or Mien-speaking patients). Results: Some themes, such as the desire to feel confident in their doctor, emerged across language groups, pointing to institutional challenges. Other themes, such as distrust in care being provided, were tied distinctly to speaking a language different from one’s provider. Still other themes, such as a sense of powerlessness, were related to cultural differences and to speaking a language (Mien) not spoken by staff. Conclusions: Findings illuminate the need to understand cultural behaviors and interactional styles in a diverse patient population to create a high-quality medical home.

  • J Participat Med 2018;10(1):e4

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