Patient-centered Organizations Research Articles

Évolution du parcours patient en chirurgie : de l’ambulatoire à la réhabilitation améliorée en chirurgie

Until the early 2000s, the management of patients undergoing surgery followed highly standardized procedures. Medical and surgical considerations primarily focused on technical aspects. Various stakeholders worked independently without a global coordination, resulting in complex and time-consuming procedures.Two models of patients’ management have changed these practices: outpatient surgery and enhanced recovery after surgery (ERAS). Outpatient surgery, initially developed in the United States, has become the standard of care in France despite shy beginnings. It emphasizes patient-centered organization to optimize hospital stay duration. ERAS, initiated in Denmark in the 1990s, aims to accelerate postoperative recovery by optimizing medical practices before, during, and after surgery.These two approaches converge towards optimizing patient’ pathways and perioperative medicine. Anesthesiologists play a critical role in this coordination, thanks to their expertise in managing recovery of vital functions. Pathway optimization has a positive economic impact by reducing length of stay and hospital costs while improving clinical outcomes.In conclusion, management of surgical patients are evolving towards a patient-centered approach, based on the coordination of all the healthcare providers. Beyond ERAS and ambulatory surgery, this transition is essential to guarantee the best possible care for patients.

Patient experiences in receiving telegenetics care for inherited cardiovascular diseases.

Telegenetics played an important role in providing genetic services to patients during the COVID-19 pandemic. In particular, at our institution, it enabled us to expand our genetic counseling and testing services to non-local family members of patients outside of our prior catchment area. However, as telegenetics continues to be utilized even as social distancing is no longer required, further information is needed regarding the impact of this modality on patient experience within cardiogenetics. This study qualitatively explored the experiences of 12 genotype positive individuals who underwent genetic counseling and testing via telegenetics during the first 22months of the COVID-19 pandemic and compared the experiences of local vs. non-local patients. Both local and non-local participants discussed similar benefits and drawbacks to the use of technology in telegenetics and overall found the use of telegenetics and at-home genetic testing to be convenient. Both groups also noted having to make changes in their daily lives and future planning as a consequence of the positive genetic testing results. However, access to follow-up care differed between local and non-local participants, with more local participants having scheduled and attended appointments with the appropriate medical providers compared to non-local participants. Supplying non-local patients access to remote cardiogenetic testing may therefore require careful consideration in how to ensure proper follow-up care for genotype positive patients and may necessitate the involvement of national professional or patient-centered organizations to help streamline the referral process.

Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership

BackgroundResearch in sarcomas has historically been the domain of scientists and clinicians attempting to understand the disease to develop effective treatments. This traditional approach of placing scientific rigor before the patient’s reality is changing. This evolution is reflected in the growth of patient-centered organizations and patient advocacy groups that seek to meaningfully integrate patients into the research process. The aims of this study are to identify the unanswered questions regarding sarcomas (including gastrointestinal stromal tumors and desmoid fibromatosis) from patient, carer, and clinical perspectives and examine how patients and carers want to be involved in sarcoma research.MethodsThe Patient-Powered Research Network of Sarcoma Patients EuroNet set up a Priority Setting Partnership (PSP) in collaboration with stakeholders from the sarcoma research field. This PSP is largely based on the James Lind Alliance methodology.ResultsIn total, 264 sarcoma patients (73%) and carers (27%) from all over the world participated in the online survey and covered the full spectrum of sarcomas. The topics mentioned were labeled in accordance with the Common Scientific Outline of the International Cancer Research Partnership and lists for potential research topics, advocacy topics, and requests for information were constructed. With regard to patient and carer involvement, 64% were very willing to be actively involved and mainly in the following areas: sharing perspectives, discussing patient-clinician interactions, and attending research meetings.ConclusionsThe first results of this sarcoma PSP identified important research questions, but also important topics for patient advocacy groups and further improvement of information materials. Sarcoma patients and carers have a strong wish to be involved in multiple aspects of sarcoma research. The next phase will identify the top 10 research priorities per tumor type. These priorities will provide guidance for research that will achieve greatest value and impact.

Patient-centered organization of obstetric care at the regional level

<h3></h3> В статье проведена оценка реализации пациенториентированных принципов в акушерской практике на примере проекта «Роды в Москве», даны рекомендации по его совершенствованию и масштабированию. <h3>ЦЕЛЬ ИССЛЕДОВАНИЯ</h3> Оценить возможности реализации пациенториентированных принципов акушерской помощи на региональном уровне, разработать рекомендации по повышению доступности акушерской помощи и удовлетворенности пациенток ее качеством. <h3>МАТЕРИАЛ И МЕТОДЫ</h3> Данное наблюдательное, несравнительное, проспективное, продолжительное многоцентровое исследование посвящено изучению доступности акушерской помощи и оценке опыта пациентки. <h3>РЕЗУЛЬТАТЫ</h3> Модель оказания акушерско-гинекологической помощи в Москве позволяет говорить о формировании стандартов родовспоможения на региональном уровне, которое включает стандартизацию и совершенствование маршрутизации с учетом предпочтений пациенток, расширенный комплекс акушерских услуг и сервиса в роддомах региона, а также формирование омниканальной коммуникации на уровне пациентки в формате единого проекта «Роды в Москве» и на уровне врача (Единая медицинская информационно-аналитическая система). <h3>ЗАКЛЮЧЕНИЕ</h3> Использование инструментов ценностно-ориентированного подхода при оказании акушерской помощи в Москве позволяет говорить о соответствии медицинской помощи по данному профилю ключевым принципам пациенториентированности. Масштабирование пациенториентированной практики оказания акушерско-гинекологической помощи позволит улучшить показатели рождаемости на национальном уровне.

Expansion of Health Networks as a Building Block of a Functioning Health Landscape

A health network is made up of institutions and organizations, resources, and people whose main purpose is to promote and improve health. The health care system in Germany is self-administering and is managed by multiple institutions and stakeholders which entails different organizations involved in the running of the health care as well as the structure of the health care system. The health care system is composed of three main areas: 1) outpatient care services, 2) inpatient care, 3) rehabilitation institutions. Some of the organizations and institutions that are mandated to run the health system include associations and representatives of different professions and service providers, regulatory bodies, health insurance companies, the Federal Ministry of Health, self-help groups, and patient-centered organizations. The German health care system is made up of four main principles: 1) compulsory insurance, 2) the principle of solidarity, 3) financing through insurance premiums, 4) selfgovernance. The goal of health care networks is to improve the overall performance of the health care systems concerning: 1) economic efficiency, 2) quality of health care services, 3) medical innovation, 4) as well as patient satisfaction.

An updated assessment of social media usage by dermatology journals and organizations

Despite the increasing prevalence of social media usage, the activity of dermatology journals and professional and patient-centered organizations on top social media platforms has not been investigated since 2012. We investigated a total of 124 dermatology journals, 242 professional organizations, and 78 patient-centered organizations to assess their presence and popularity on social media. Searches were conducted to identify journals and organizations on Facebook and Twitter. Similar searches were done for organizations on LinkedIn. The number of Facebook likes, Twitter followers, and LinkedIn followers of the dermatological entities were quantified. There were 22 (17.7%) dermatology journals active on Facebook and 21 (16.9%) on Twitter. Amongst the professional organizations, 114 (47.1%) were on Facebook, 69 (28.5%) on Twitter, and 50 (20.7%) on LinkedIn. In comparison, 68 (87.2%) patient-centered organizations were on Facebook, 56 (71.8%) on Twitter, and 56 (71.8%) on LinkedIn. Our results demonstrate that the popularity of dermatology journals and professional and patient-centered organizations on top social networking sites has grown markedly since 2012. Although the number of dermatology journals on social media has increased since 2012, their presence continues to trail behind professional and patient-centered dermatological organizations, suggesting underutilization of a valuable resource.

Dermatology on Google+

Google+ sets itself apart from other social media platforms through a number of unique features, including search engine optimization services and high user satisfaction. The purpose of this study was to evaluate the presence of dermatological entities on Google+. Searches were conducted to locate any Google+ accounts associated with the most popular dermatology journals, dermatological patient-centered organizations, and professional dermatology-related organizations on social media. Additionally, "dermatology Google+" was searched via Google, and Google+ profiles retrieved in the first page of results were assessed. Four of the five active Google+ profiles identified in the first page of Google search results were run by private dermatology practices. Only one of the 13 searched journals was active on Google+. Twenty-six of the 34 patient-centered and professional organizations had Google+ accounts, but only seven of these accounts were active in the last year. Therefore, unlike some private practices, the majority of dermatology journals and organizations have yet to take advantage of the exclusive opportunities offered by Google+ to expand their audiences and bolster their overall online presence.

Collaboration Between Academia and Practice: Interprofessional Crises Leadership and Disaster Management.

An innovative interprofessional disaster preparedness program was designed and implemented through an academic-practice partnership between a large midwestern children's hospital and a community-based state university. This course was part of a constellation of courses developed in response to Presidential Directive (HSPD) 8, a mandate to standardize disaster response training that was issued after the inefficiencies following Hurricane Katrina. A hybrid immersive and didactic approach was used to train senior leadership and frontline clinicians. Included were simulated experiences at the National Center for Medical Readiness, a workshop, and online modules. The program that focused on crisis leadership and disaster management was developed and implemented to serve patient-centered organizations.

Social Networking Sites

The use of social media by dermatology journals and professional and patient-centered dermatology organizations remains largely unknown and, to our knowledge, has yet to be fully evaluated. To evaluate and quantify the extent of involvement of dermatology journals, professional dermatology organizations, and dermatology-related patient advocate groups on social networking sites. We obtained an archived list of 102 current dermatology journals from SCImago on the World Wide Web and used the list to investigate Facebook, Twitter, and individual journal websites for the presence of social media accounts. We identified professional and patient-centered dermatology organization activity on social networks through queries of predetermined search terms on Google, Facebook, Twitter, and LinkedIn. The activity of each entity was documented by recording the following metrics of popularity: the numbers of Facebook "likes," Twitter "followers," and LinkedIn "members." The numbers of Facebook likes, Twitter followers, and LinkedIn members corresponding to each dermatology journal and each professional and patient-related dermatology organization. On July 17, 2012, of the 102 dermatology journals ranked by SCImago, 12.7% were present on Facebook and 13.7% on Twitter. We identified popular dermatology journals based on Facebook likes and Twitter followers, led by the Journal of the American Academy of Dermatology and Dermatology Times, respectively. Popular professional dermatology organizations included dermRounds Dermatology Network (11 251 likes on Facebook and 2900 followers on Twitter). The most popular dermatology patient-centered organizations were the Skin Cancer Foundation (20 119 likes on Facebook), DermaTalk (21 542 followers on Twitter), and the National Psoriasis Foundation (200 members on LinkedIn). Patient-centered and professional dermatology organizations use social networking sites; however, academic journals tend to lag behind significantly. Although some journals are active in social media, most have yet to recognize the potential benefits of fully embracing popular social networks.

A Conflict of Responsibility

In its program END THE WAIT, the National Kidney Foundation (NKF) outlined four comprehensive strategies to achieve the goal that within 10 years, every individual on the US waiting list will receive a transplant within 1 year of listing. Lifetime immunosuppressive coverage is a critical piece of the foundation of this program. Events in 2009 that were dedicated toward achieving a lifetime immunosuppressive benefit were complicated by legislative challenges and a dynamic that placed oral medications in the ESRD bundling proposal in direct conflict with the potential for the lifetime immunosuppressive benefit. In line with its mission, the NKF could not sacrifice one kidney patient constituency for another. Successful patient-centered organizations stay consistent with their mission. The NKF had to weigh the risk of postponing a long-sought goal and its relationships with other organizations with standards of patient safety and equitable and efficient patient care. In a perfect world, we never have to make such choices. In the real world, we can use such choices to forge new ways and dialogue to achieve better health care for all patients affected by kidney disease.

Responsible patient advocacy: Perspectives from the Alpha‐1 Foundation

Patient advocacy groups play an increasingly prominent role in patient care and clinical research. To help manage some of the unique challenges associated with the involvement of patient-centered organizations in the delivery of medical services and conduct of clinical research, patient advocacy groups may wish to establish an ethics advisory board. Although hospitals and government agencies often adopt this approach, ethics advisory boards have not been widely used by patient advocacy groups. We report on the experiences of an ethics advisory board for a patient advocacy group actively involved in genetic testing and clinical research. Drawing on the experiences of this organization, we examine the potential advantages and limitations of this approach to navigating the complex moral terrain of contemporary medicine and biomedical research.

Patient-centered instructions for medications prescribed for the treatment of heart failure

Background: Chronic heart failure (CHF) is associated with reduced functional capacity and quality of life, particularly among older adults. Complex medication regimens for CHF challenge older patients' ability to adhere to them, in part because of age-related cognitive decline and poor communication about medications. Objective: This article describes patient-centered instructions for taking CHF medications that were developed as part of a multifaceted pharmacy-based intervention to improve medication adherence and health-related outcomes among older adults with CHF. The findings of 3 initial validation studies investigating patients' reactions to the instructions are reported. Methods: Patients' responses to the instructions were measured using focus group (study 1) and questionnaire (studies 2 and 3) techniques. Results: Overall, older adults with CHF in the 3 studies preferred the patient-centered instructions to the standard pharmacy instructions (93.8% in study 1, 65.0% in study 2). In addition, participants' preferences depended on their medication-related goals. A preference for patient-centered instructions reflected a focus on ease of understanding (as supported by the use of large type size, icons, and patient-centered organization), whereas a preference for the standard pharmacy instructions reflected a focus on the amount of information provided about drug interactions (studies 2 and 3). Conclusions: In the 3 validation studies, older adults with CHF tended to prefer the patient-centered instructions to the standard pharmacy instructions, although the results were not statistically significant in study 2. This suggests that the use of such instructions may improve patients' medication knowledge and their adherence to treatment regimens.