Lived experience experts: a name created by us for us.

Plain Language SummaryPeople affected by a medical disorder, usually called patients, develop a very special expertise by living with it every day. They know, better than anyone else, how it affects their lives, what they go through to get a diagnosis and treatment, how treatments affect them, how symptoms or side effects impact their daily life, and what it is like to interact with the health care system. The people who share their lives, usually close family members like parents, partners, or siblings, develop similar knowledge. When it comes to research, patients are usually seen only as subjects. In the recent National Hemophilia Foundation State of the Science Research Summit and the subsequent National Research Blueprint project, people with inherited bleeding disorders and their family members were invited to participate in creating an agenda of the most important research that needs to be done, and in designing the approach to do the research. As full members of State of the Science Working Groups, and in leadership roles in the National Research Blueprint, they realized they needed a title that recognizes and clearly communicates their unique expertise, so that the people they work with understand what they bring to the table. They chose the term lived experience expert (LEE). Especially in rare disorders, LEEs have unique, valuable expertise to contribute to all stages of research (e.g. planning and designing, participating and recruiting participants, communicating its importance and results). Including LEEs in leadership roles will make research stronger.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science.

BACKGROUND: The National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities. RESEARCH DESIGN AND METHODS: NHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities. RESULTS: WG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital. CONCLUSIONS: An enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity.

Research into how people get their health care, called health services research, is important to understand if care is being delivered equitably and efficiently. This research figures out how to provide the best care at the lowest cost and finds out if everyone gets equally good care. Diversity and inclusion research focuses on whether all marginalized and minoritized populations (such as a given social standing, race, ethnicity, sex, gender identity, sexuality, age, income, disability status, language, culture, faith, geographic location, or country of birth) receive equitable care. This includes checking whether different populations are all getting the care they need and looking for ways to improve the care. Implementation science studies how to make a potential improvement work in the real world. The improvement could be a new way to diagnose or treat a health condition, a better way to deliver health care or do research, or a strategy to remove barriers preventing specific populations from getting the best available care. The National Hemophilia Foundation focuses on improving the lives of all people with bleeding disorders (BD). They brought BDs doctors, nurses, physical therapists, social workers, professors, and government and industry partners together with people and families living with BDs to discuss research in the areas described above. The group came up with important future research questions to address racism and other biases, and other changes to policies, procedures, and practices to make BD care equitable, efficient, and effective.

Onset timing of treadmill belt perturbations influences stability during walking.

Split-belt treadmills have become popular tools for investigating stability during walking by using belt accelerations to induce slip-like perturbations. While the onset timing of destabilizing perturbations is a critical determinant of an individual's stabilizing response, previous studies have predominantly delivered belt acceleration perturbations at heel strike or have not explicitly controlled onset as a percentage of the gait cycle. To address this gap, we 1) developed an algorithm to target transient increases in unilateral belt speed to begin at specific percentages of the walking gait cycle, 2) validated the algorithm's accuracy and precision, and 3) investigated the influence of different onset timings on spatial stability measures. We evaluated desired onset timings of 10, 15, 20, and 30% of the gait cycle during walking at 1.25 m/s and measured step lengths and widths, as well as anteroposterior and mediolateral margins of stability during the perturbed and four recovery steps in 10 able-bodied participants. From 800 perturbations, we found a mean (standard deviation) delay in onset timing of 5.2% (0.9%) of the gait cycle, or 56 (9) ms. We hypothesized later onset timings would elicit more stabilizing responses due to the less stable configuration of the body during late vs. early single stance. Our data generally supported this hypothesis - in comparison to earlier onset timings, later onset timings precipitated greater stabilizing responses, including larger step lengths, step widths, and anteroposterior/mediolateral margins of stability on the perturbed step, in addition to shorter step lengths and wider step widths on the first step post-perturbation.

An approach to persons with chronic fatigue syndrome based on the model of human occupation: part one, impact on occupational performance and participation.

Chronic fatigue syndrome (CFS) is a prevalent and disabling condition that involves six or more months of unexplained fatigue severe enough to interfere with previous levels of occupational, educational, and/or social performance. The fatigue is accompanied by at least four of eight additional physical and cognitive symptoms (Fukuda et al., 1994). This paper conceptualizes the multiple factors that affect occupational adaptation in persons with CFS. The Model of Human Occupation (MOHO) if used as a framework for understanding the synergistic and evolving relationships between motivation, roles, habits, performance capacities, and the environment as they influence individuals with CFS. Examples from the literature, autobiographical accounts, and from practice experience are used to illustrate the experience and impact of CFS on everyday life.