@Article{info:doi/10.2196/jopm.8939,
author="Holliday, Maree Catherine",
title="A Snapshot of Community Engagement in Research in the Context of an Evolving Public Health Paradigm: Review",
journal="J Participat Med",
year="2018",
month="Jan",
day="17",
volume="10",
number="1",
pages="e1",
keywords="Community engagement, weight loss, paradigm shift, public health policy",
abstract="Background: Community engagement is a work in process. Researchers continue to refine the process of collaboration and look to best practice and lessons learned for guidance in this relatively new model. Objective: The aim of this study was to provide a snapshot of whether community engagement has been included in the design and implementation of research initiatives in Australia, Canada and the United Kingdom. The secondary aim is to identify the underlying themes present, to identify theories and tools that drive research. Methods: A literature search was performed to identify studies that have been conducted to reduce the weight of the general population. Results: The results of the study, which focused on the field of weight loss, indicate that scientific and technological advancements are the primary drivers of research. However, these new research initiatives have largely been undertaken in the absence of community engagement. Conclusions: The study concludes that initiatives need to adapt to a wider range of stakeholders, develop equitable community engagement platforms and take into consideration. ",
doi="10.2196/jopm.8939",
url="http://jopm.jmir.org/2018/1/e1/"
}


@Article{info:doi/10.2196/jopm.8929,
author="Lin, Hamady Susan
and Dionne, P. Timothy",
title="Interventions to Improve Movement and Functional Outcomes in Adult Stroke Rehabilitation: Review and Evidence Summary",
journal="J Participat Med",
year="2018",
month="Jan",
day="18",
volume="10",
number="1",
pages="e3",
keywords="stroke",
keywords="evidence-based health care",
keywords="patient-centered care",
keywords="review",
abstract="Background: Patients who have had a stroke may not be familiar with the terminology nor have the resources to efficiently search for evidence-based rehabilitation therapies to restore movement and functional outcomes. Recognizing that a thorough systematic review on this topic is beyond the scope of this article, we conducted a rapid review evidence summary to determine the level of evidence for common rehabilitation interventions to improve movement/motor and functional outcomes in adults who have had a stroke. Objective: The objective of this study was to find evidence for common rehabilitation interventions to improve movement/motor and functional outcomes in adults who have had a stroke. Methods: Medline Complete, PubMed, CINAHL Complete, Cochrane Database, Rehabilitation and Sports Medicine Source, Dissertation Abstracts International, and National Guideline Clearinghouse, from 1996 to April of 2016, were searched. From 348 articles, 173 met the following inclusion criteria: (1) published systematic reviews or meta-analyses, (2) outcomes target functional movement or motor skills of the upper and lower limbs, (3) non-pharmacological interventions that are commonly delivered to post-stroke population (acute and chronic), (4) human studies, and (5) English. Evidence tables were created to analyze the findings of systematic reviews and meta-analyses by category of interventions and outcomes. Results: This rapid review found that the following interventions possess credible evidence to improve functional movement of persons with stroke: cardiorespiratory training, therapeutic exercise (ie, strengthening), task-oriented training (task-specific training), constraint-induced movement therapy (CIMT), mental practice, and mirror therapy. Neuromuscular electrical stimulation (NMES) (ie, functional electrical stimulation) shows promise as an intervention for stroke survivors. Conclusions: Most commonly delivered therapeutic interventions to improve motor recovery after a stroke possess moderate quality evidence and are effective. Future research recommendations, such as optimal timing and dosage, would help rehabilitation professionals tailor interventions to achieve the best outcomes for stroke survivors. ",
doi="10.2196/jopm.8929",
url="http://jopm.jmir.org/2018/1/e3/"
}


@Article{info:doi/10.2196/jopm.8957,
author="Prior, Jane Sarah
and Campbell, Steven",
title="Patient and Family Involvement: A Discussion of Co-Led Redesign of Healthcare Services",
journal="J Participat Med",
year="2018",
month="Feb",
day="01",
volume="10",
number="1",
pages="e5",
keywords="co-led redesign",
keywords="health care",
keywords="patient and family engagement",
keywords="patient involvement",
keywords="rural health",
doi="10.2196/jopm.8957",
url="http://jopm.jmir.org/2018/1/e5/"
}


@Article{info:doi/10.2196/jopm.8958,
author="Katsanis, Huston Sara
and Minear, A. Mollie
and Sadeghpour, Azita
and Cope, Heidi
and Perilla, Yezmin
and Cook-Deegan, Robert
and 
and Katsanis, Nicholas
and Davis, E. Erica
and Angrist, Misha",
title="Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions",
journal="J Participat Med",
year="2018",
month="Jan",
day="30",
volume="10",
number="1",
pages="e2",
keywords="partnership",
keywords="exome sequencing",
keywords="genome sequencing",
keywords="return of results",
keywords="participant engagement",
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. ",
doi="10.2196/jopm.8958",
url="http://jopm.jmir.org/2018/1/e2/"
}


@Article{info:doi/10.2196/jopm.9229,
author="Berkowitz, L. Rachel
and Phillip, Nimeka
and Berry, Lyn
and Yen, H. Irene",
title="Patient Experiences in a Linguistically Diverse Safety Net Primary Care Setting: Qualitative Study",
journal="J Participat Med",
year="2018",
month="Jan",
day="22",
volume="10",
number="1",
pages="e4",
keywords="safety-net providers",
keywords="urban health services",
keywords="primary health care",
keywords="patient-centered care",
keywords="qualitative research",
keywords="quality of health care",
keywords="communication barriers",
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. ",
doi="10.2196/jopm.9229",
url="http://jopm.jmir.org/2018/1/e4/"
}