Facilitating and supporting the engagement of patients, families and caregivers in research: the "Ottawa model" for patient engagement in research.

BACKGROUND: Patient engagement is increasingly being recognized as a critical component of health research; however, institutional models for building infrastructure and capacity for patient engagement in research are limited. There is an opportunity to create reproducible and scalable models of patient engagement in research and share best and promising practices. MAIN BODY: In this article, we describe the development and features of the framework for the Ottawa Patient Engagement in Research Model at The Ottawa Hospital (TOH) and the Ottawa Hospital Research Institute (OHRI). Key components of the model include: a Patient and Family Engagement Program at TOH, which recruits, educates, and supports patients, families and caregivers to engage in clinical care, governance, and research; the Ottawa Methods Centre within the OHRI, which leads methodological research and provides support to investigators for patient engagement and patient-oriented research at TOH; and the Office of Patient Engagement in Research Activities, also within the OHRI, which facilitates collaborations between patients, researchers, clinicians and other stakeholders. Early success of this model can be attributed to aligned institutional priorities between TOH, OHRI and patients, the establishment of a patient engagement policy, ongoing education and support provided to patient partners and researchers, and innovative recruitment, tracking and evaluation procedures. Ongoing challenges and next steps include promoting diversity among patient partners, implementing an equitable compensation policy, engaging patients across a variety of roles and research areas, and developing resources to expand and sustain this program. CONCLUSION: This model represents a unique effort of patients, clinicians, researchers, and policymakers across disciplines and institutions to produce a harmonized strategy and infrastructure for meaningful collaboration with patients and families in health research, and capacity building in patient-oriented research.

Involving patients and families as partners in planning, conducting, and sharing results of health research, referred to as patient engagement, is becoming more common and recognized as important part of the research process. However, guidelines and examples of how to do this well are limited. In this article, we describe the development and features of the Ottawa Patient Engagement in Research Model at The Ottawa Hospital (TOH) and the Ottawa Hospital Research Institute (OHRI). Key pieces of the model include: a Patient and Family Engagement Program, which recruits, educates, and supports patients and families to engage in clinical care, decision making, and research; the Ottawa Methods Centre, which leads studies to understand the best methods to conduct research, and provides support to researchers for patient engagement; and the Office of Patient Engagement in Research Activities, which connects patients, researchers, clinicians, and other stakeholders. Early success of this model may be a result of shared priorities between TOH, OHRI and patients, the creation of a patient engagement policy, ongoing support provided to patients, family members and researchers, and creative methods for recruitment, tracking and evaluation procedures. Ongoing challenges and next steps include promoting diversity among patient partners, setting up a fair and transparent policy for compensating patient partners, and engaging patients across a variety of roles and research areas.This model represents a unique effort of patients, clinicians, researchers, and policymakers across disciplines and institutions to produce one strategy for meaningful teamwork with patients and families in health research.

Group practice impacts on patients, physicians and healthcare systems: a scoping review.

OBJECTIVE: To identify the advantages and disadvantages that group practices have on patients, physicians and healthcare systems. STUDY DESIGN: A scoping review was performed based on the methodology proposed by Arksey and O'Malley, and refined by Levac et al. Titles and abstracts were screened by two reviewers. A quantitative analysis was performed to assess the type, year and region of publication, as well as the population studied. A qualitative descriptive analysis was performed to identify common themes. STUDY SETTING: MEDLINE, EMBASE and Cochrane databases were searched from database inception to October 2018 for papers which assessed outcomes relevant to the research question. RESULTS: Our search strategy returned 2408 papers and 98 were included in the final analysis. Most papers were from the USA, were surveys and assessed physician outcomes. Advantages of group practices for patients included improved satisfaction and quality of care. Studies of physicians reported improved quality of life and income, while disadvantages included increased stress due to poor interpersonal relationships. Studies of healthcare systems reported improved efficiency and better utilisation of resources. CONCLUSIONS: Group practices have many benefits for patients and physicians. However, further work needs to be done assessing patient outcomes and establishing the elements that make a group practice successful.

Treatment algorithm for the use of psychopharmacological agents in individuals prenatally exposed to alcohol and/or with diagnosis of fetal alcohol spectrum disorder (FASD).

Psychotropic medication treatment of individuals who have experienced prenatal alcohol exposure (PAE) has lagged behind psychosocial interventions. Multiple psychotropic medications are often prescribed for those diagnosed with a range of neurodevelopmental disabilities and impairments of PAE (neurodevelopmental disorder associated with prenatal alcohol exposure and/or fetal alcohol spectrum disorder [ND-PAE/FASD]). Despite the diverse comorbid mental disorders, there are no specific guidelines for psychotropic medications for individuals with ND-PAE/FASD. When prescribed, concerned family members and caregivers of individuals with ND-PAE/FASD reported that polypharmacy, which was typical and adverse effects render the psychotropic medications ineffective. The objective of this work was to generate a treatment algorithm for the use of psychopharmacological agents specifically for individuals with ND-PAE/FASD. The development of decision tree for use to prescribe psychotropic medications incorporated findings from previous research and the collective clinical experience of a multidisciplinary and international panel of experts who work with individuals with ND-PAE/FASD, including an algorithm specialist. After multiple meetings and discussions, the experts reached consensus on how best to streamline prescribing along neurodevelopmental clusters. These were subdivided into four ligand-specific, receptor-acting medication targets (hyperarousal, emotional dysregulation, hyperactive/neurocognitive, and cognitive inflexibility). Each cluster is represented by a list of common symptoms. The experts recommended that prescribers first ensure adequate psychosocial and environmental, including sufficient dietary, exercise, and sleep support before prescribing psychotropic medications. Treatment then progresses through three steps of psychotropic medications for each cluster. To support established treatment goals, the most function impairing clusters are targeted first.

Putting PhDs to work: career planning for today's scientist.

Individual development plans (IDPs) have been promoted nationally as a tool to help research trainees explore career opportunities and set career goals. Despite the interest in IDPs from a policy perspective, there is little information about how they have been used. The authors examined IDP awareness and use, the benefits of creating an IDP, and ways to facilitate its use by administering a survey to current or former postdoctoral researchers via the National Postdoctoral Association (NPA) and University of Alabama at Birmingham email lists; individuals belonging to Federation of American Societies for Experimental Biology member societies who mentored postdocs; and postdoctoral administrators at member institutions of the Association of American Medical Colleges and the NPA. Although most postdoctoral administrators (>80%) were familiar with IDPs, less than 50% of postdocs and only 20% of mentors were aware of IDPs. For those postdocs and mentors who reported creating an IDP, the process helped postdocs to identify the skills and abilities necessary for career success and facilitated communication between postdocs and their mentors. Despite the fact that creating an IDP benefits postdocs and mentors, IDP use will likely remain low unless institutions and research mentors encourage trainees to engage in this process.