%0 Journal Article %@ 2152-7202 %I JMIR Publications %V 10 %N 1 %P e4 %T Patient Experiences in a Linguistically Diverse Safety Net Primary Care Setting: Qualitative Study %+ DrPH ProgramSchool of Public HealthUniversity of California, BerkeleySchool of Public Health, 50 University Hall, #7360University of California, BerkeleyBerkeley, CA, 94720-7360United States1 (510) 642 8626berkowr@gmail.com  %A Berkowitz,Rachel L %A Phillip,Nimeka %A Berry,Lyn %A Yen,Irene H %K safety-net providers %K urban health services %K primary health care %K patient-centered care %K qualitative research %K quality of health care %K communication barriers %D 2018 %7 22.01.2018 %9 Original Paper %J J Participat Med %G English %X 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. %R 10.2196/jopm.9229 %U http://jopm.jmir.org/2018/1/e4/ %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 9 %N 1 %P e15 %T The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting %+ Helen Diller Family Comprehensive Cancer CenterDepartment of Surgery and Philip R. Lee Institute for Health Policy StudiesUniversity of California San FranciscoSuite 265, Box 09363333 California StSan Francisco, CA, CA 94118United States1 (650) 533 69651 (415) 651 8574jeff.belkora@ucsfmedctr.org  %A Belkora,Jeffrey K %A Naguit,Marijoyce %A Stupar,Lauren %A Wiley,James %A Volz,Shelley %A O'Donnell,Sara %K Visit preparation %K self-efficacy %K anxiety %K question list %K patient support %K community-based participatory research %K psycho-oncology. %D 2017 %7 22.8.2017 %9 Evidence, Research %J J Participat Med %G English %X Background: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. Objective: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? Methods: The organization surveyed patients on decision self-efficacy (273 respondents, 99% response rate) and anxiety (190, 68%) before and after question-listing interventions delivered from 2006 – 2011. We analyzed responses using two-sided paired t-tests at 5% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). Results: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. Conclusions: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety. %R 10.2196/jopm.8949 %U http://jopm.jmir.org/2017/1/e15/ %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 9 %N 1 %P e13 %T Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event %+ Arthritis Research Canada5591 No 3 RdRichmond, BC, V6X 2C7Canada1 (604) 207 0400jleese@arthritisresearch.ca  %A Leese,Jenny %A Kerr,Sheila %A McKinnon,Annette %A Carruthers,Erin %A Backman,Catherine %A Li,Linda %A Townsend,Anne %K Patient engagement %K research collaboration %K knowledge translation %K patient-led %D 2017 %7 04.08.2017 %9 Case Studies, Evidence %J J Participat Med %G English %X Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB’s decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices. %R 10.2196/jopm.8756 %U http://jopm.jmir.org/2017/1/e13/ %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 9 %N 1 %P e14 %T Information and Communication Technologies to Support Chronic Disease Self-Management: Preconditions for Enhancing the Partnership in Person-Centered Care %+ %A Wildevuur,Sabine %A Thomese,Fleur %A Ferguson,Julie %A Klink,Ab %K person-centered care %K chronic disease management %K cancer %K self-management %K partnership %K information %K communication %K technologies %D 2017 %7 07.07.2017 %9 Evidence, Research %J J Participat Med %G English %X Objective: In order to alleviate the pressure on health care systems exerted by the growing prevalence of chronic diseases, information and communication technologies (ICT) are being introduced to enable self-management of chronic diseases by supporting partnerships between patients and health care professionals. This move towards chronic disease self-management is accompanied by a shift in focus on integrating the patient with his or her perceptions on the chronic disease as a full-fledged partner into the health care system. This new perspective has been described as “person-centered care” (PCC). To date, information and communication technologies only partially build on the principles of PCC. This paper examines the preconditions of ICT to enable a person-centered approach to chronic disease management. Methods: Using cancer treatment as a case study for ICT-enabled PCC, we conducted a comparative analysis of thirteen scientific studies on interventions presented as ICT-enabled PCC for cancer treatment, to answer the research question: What are the preconditions of ICT-enabled PCC in chronic disease management? Based on the intended and actual outcomes, we distilled in several analytic steps the preconditions of ICT-enabled PCC for chronic disease self-management. Results: We distinguished four user-related preconditions of ICT-enabled PCC: (shared) decision making, personalized ICT, health-related quality of life, and efficiency. Conclusions: We argue that these four preconditions together can improve people’s self-management of chronic diseases by strengthening the partnership between the patient and the healthcare professional. Moreover, the study revealed a discrepancy between intended and reported actual outcomes in terms of realizing person-centered care. %R 10.2196/jopm.8846 %U http://jopm.jmir.org/2017/1/e14/