Patient-Centered Framework for Rehabilitation Research in Outpatient Settings

Conducting high-quality clinical research is dependent on merging scientific rigor with the clinical environment. This is often a complex endeavor that may include numerous barriers and competing interests. Overcoming these challenges and successfully integrating clinical research programs into clinical practice settings serving rehabilitation outpatients is beneficial from both a logistical perspective (eg, supports efficient and successful research procedures) and the establishment of a truly patient-centered research approach. Leveraging our experience with navigating this research-clinical care relationship, this article (1) proposes the Patient-Centered Framework for Rehabilitation Research, a model for integrating patient-centered research in an outpatient clinical setting that incorporates a collaborative, team-based model encompassing patient-centered values, as well as strategies for recruitment and retention, with a focus on populations living with disabilities or chronic diseases; (2) describes application of this framework in a comprehensive specialty multiple sclerosis center with both general strategies and specific examples to guide adaptation and implementation in other settings; and (3) discusses the effect of the framework as a model in 1 center, as well as the need for additional investigation and adaptation for other populations. The 5 interconnected principles incorporated in the Framework and which prioritize patient-centeredness include identifying shared values, partnering with the clinical setting, engaging with the population, building relationships with individuals, and designing accessible procedures. The Patient-Centered Framework for Rehabilitation Research is a model presented as an adaptable roadmap to guide researchers in hopes of not only improving individual patients’ experiences but also the quality and relevance of rehabilitation research as a whole. Future investigation is needed to test the Framework in other settings.     

“It's Part of Me,Not All of Me”: Young Women's Experiences of Receiving a Diagnosis Related to Diverse Sex Development

Study ObjectiveTo understand young women's experiences of receiving a diagnosis related to diverse sex development.DesignA qualitative narrative analysis of interviews.SettingKarolinska University Hospital.ParticipantsNine women (aged 20-26 years) with complete androgen insensitivity syndrome, XY or XX gonadal dysgenesis.InterventionsSemistructured interviews.Main Outcome MeasuresA narrative approach was used to analyze the interviews. This involved identification of individual narratives of receiving the diagnosis, as well as identification of key issues that were common across interviews.ResultsThe analysis showed how participants' prediagnosis life experiences framed how medical information was perceived upon diagnosis. All participants had been informed about their condition before the study, but not all remembered the name of their diagnosis. Participants described positive characteristics of health professionals, such as being flexible and able to adapt to patients' individual needs. Clinicians' strategies, such as normalizing patients' experiences, were usually perceived as supportive, but were not always considered helpful. After the diagnosis, participants were worried about potential social, practical, and philosophical issues.ConclusionThis research highlighted the importance of clinicians taking an exploratory and individualized approach to the sensitive process of disclosing a diagnosis related to diverse sex development to young adults. There are various strategies health professionals can use that might help young people to develop their knowledge about their condition: (1) repeating information to help the patient remember; (2) using language that is not too medicalized; and (3) communicating in a way that is meaningfully connected to patients' everyday lives.     

A patient in the clinic; a person in the world. Why shared decision making needs to center on the person rather than the medical encounter

Interest in shared decision making (SDM) has increased and become widely promoted. However, from both practical and measurement perspectives, SDM’s origin as an outgrowth of patient autonomy has resulted in narrowly conceptualizing and operationalizing decision making. The narrow focus on individual patient autonomy fails in four main ways: 1) excluding several facets of the roles, actions, and influences of decision partners in decision making; 2) focusing solely on the medical encounter; 3) ignoring the informational environment to which patients have access; and 4) treating each encounter as independent of all others. In addition to creating a research agenda that could answer important outstanding questions about how decisions are made and the consequences thereof, reconceiving SDM as centered on the person rather than the medical encounter has the potential to transform how illness is experienced by patients and families and how clinicians find meaning in their work.     

以患者为中心的智慧医疗应用模式研究与实践

阐述医院信息化与智慧医疗的关系，对国内外医院信息化与智慧医疗发展状况进行分析。结合武汉市中心医院智慧医疗创新应用的实践经验，从关键技术、应用效果等方面提出一种以患者为中心的智慧医疗应用模式。