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Health Expectations: An International Journal of Public Participation in Health Care and Health Policy

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https://www.readbyqxmd.com/read/30520175/the-voice-of-patients-in-system-redesign-a-case-study-of-redesigning-a-centralized-system-for-intake-of-referrals-from-primary-care-to-rheumatologists-for-patients-with-suspected-rheumatoid-arthritis
#1
Elena Lopatina, Jean L Miller, Sylvia R Teare, Nancy J Marlett, Jatin Patel, Claire E H Barber, Dianne P Mosher, Tracy Wasylak, Linda J Woodhouse, Deborah A Marshall
BACKGROUND: The published literature demands examples of health-care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. METHODS: This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health-care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)-centralized intake...
December 5, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30478979/reconciling-the-theory-and-reality-of-shared-decision-making-a-matching-approach-to-practitioner-leadership
#2
REVIEW
Stephen L Brown, Peter Salmon
Shared decision making (SDM) evolved to resolve tension between patients' entitlement to make health-care decisions and practitioners' responsibility to protect patients' interests. Implicitly assuming that patients are willing and able to make "good" decisions, SDM proponents suggest that patients and practitioners negotiate decisions. In practice, patients often do not wish to participate in decisions, or cannot make good decisions. Consequently, practitioners sometimes lead decision making, but doing so risks the paternalism that SDM is intended to avoid...
November 26, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30472770/respect-trust-and-continuity-a-qualitative-study-exploring-service-users-experience-of-involvement-at-a-healthy-life-centre-in-norway
#3
Espen Sagsveen, Marit B Rise, Kjersti Grønning, Heidi Westerlund, Ola Bratås
BACKGROUND: To meet the challenges caused by non-communicable diseases, Norway has established Healthy Life Centres within primary care to encourage a healthy lifestyle. To promote people's health and ensure high-quality services, user involvement in contemporary health care is regarded as essential. OBJECTIVE: To explore the experience of user involvement among Healthy Life Centre users participating in individual health consultations, followed by physical activity groups and/or diet courses...
November 24, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30430714/barrett-s-oesophagus-a-qualitative-study-of-patient-burden-care-delivery-experience-and-follow-up-needs
#4
James Britton, Shaheen Hamdy, John McLaughlin, Maria Horne, Yeng Ang
BACKGROUND: Barrett's oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long-term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients' personal burden, care delivery experience and participation in health-care delivery decisions. OBJECTIVE: To identify and explore factors impacting BO patients' health-related quality of life, follow-up needs and views on new models of follow-up care...
November 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30417517/developing-quality-criteria-for-patient-directed-knowledge-tools-related-to-clinical-practice-guidelines-a-development-and-consensus-study
#5
Trudy van der Weijden, Dunja Dreesens, Marjan J Faber, Nanne Bos, Ton Drenthen, Ingrid Maas, Sonja Kersten, Uriëll Malanda, Sander van der Scheur, Heleen Post, Anouk Knops
BACKGROUND: Patient-directed knowledge tools such as patient versions of guidelines and patient decision aids are increasingly developed to facilitate shared decision making. In this paper, we report how consensus was reached within the Netherlands on quality criteria for development, content and governance of these tools. METHOD: A 12-month development and consensus study. The consortium worked on four work packages: (a) reviewing existing criteria; (b) drafting the quality criteria; (c) safe-guarding the acceptability and feasibility of the draft criteria by participatory research in on-going tool development projects; and (d) gaining formal support from national stakeholders on the quality criteria...
November 11, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30411450/how-oncology-teams-can-be-patient-centred-opportunities-for-theoretical-improvement-through-an-empirical-examination
#6
Karine Bilodeau, Dominique Tremblay
BACKGROUND: In the context of interprofessional practice, a patient-centred approach is recommended, which generally means power-sharing, shared decision making and involving patients as part of the health-care team. These aspects, which are essential to "patient-centred" practice, do not appear to be sufficient to illustrate the full richness of this practice. OBJECTIVE: This article aimed to understand how interprofessional patient-centred (IPPC) practice in oncology teams contributes to creating a more positive experience for patients...
November 8, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30387238/online-accounts-of-gene-expression-profiling-in-early-stage-breast-cancer-interpreting-genomic-testing-for-chemotherapy-decision-making
#7
Emily Ross, Julia Swallow, Anne Kerr, Sarah Cunningham-Burley
BACKGROUND: Genomic techniques are being developed within oncology and beginning to be experienced within routine cancer care. Little is known about how these tools feature in patients' experiences of treatment decision making. OBJECTIVE: This research explores the ways in which women interpret and discuss gene expression profiling for breast cancer treatment decision making, as articulated within online accounts. DESIGN: This study used a qualitative approach to analyse written exchanges focusing on gene expression profiling in the UK (Oncotype DX test)...
November 1, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30378234/current-trends-in-patient-and-public-involvement-in-cancer-research-a-systematic-review
#8
REVIEW
Kathrine Hoffmann Pii, Lone Helle Schou, Karin Piil, Mary Jarden
BACKGROUND: Patient and public involvement (PPI) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research. OBJECTIVE: To describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations...
October 30, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30375111/evaluation-of-a-project-to-engage-patients-in-the-development-of-a-patient-reported-measure-for-hiv-care-the-i-score-study
#9
David Lessard, Kim Engler, Isabelle Toupin, Jean-Pierre Routy, Bertrand Lebouché
BACKGROUND: Patient engagement (PE), patients' meaningful involvement in research through partnerships and sensitivity to their expertise, is receiving attention. However, PE initiatives are poorly reported and little is known about patients' perspective on PE. OBJECTIVE: To document and evaluate the first phase (22 months) of a PE Project for the I-Score Study which is developing a patient-reported measure of HIV treatment adherence barriers, we describe the nature of PE conducted, determine the level of PE achieved and present its impacts from the engaged patients' perspective...
October 29, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30345726/-change-is-what-can-actually-make-the-tough-times-better-a-patient-centred-patient-safety-intervention-delivered-in-collaboration-with-hospital-volunteers
#10
Gemma Louch, Mohammed A Mohammed, Lesley Hughes, Jane O'Hara
BACKGROUND: The PRASE (Patient Reporting and Action for a Safe Environment) intervention provides a way to systematically collect patient feedback to support service improvement. To provide a sustainable mechanism for the PRASE intervention, a 2-year improvement project explored the potential for hospital volunteers to facilitate the collection of PRASE feedback. OBJECTIVE: To explore the implementation of the PRASE intervention delivered in collaboration with hospital volunteers from the perspectives of key stakeholders...
October 21, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30341795/potential-harms-associated-with-routine-collection-of-patient-sociodemographic-information-a-rapid-review
#11
Jennifer Petkovic, Stephanie L Duench, Vivian Welch, Tamara Rader, Alison Jennings, Alan J Forster, Peter Tugwell
BACKGROUND: Health systems are recommended to capture routine patient sociodemographic data as a key step in providing equitable person-centred care. However, collection of this information has the potential to cause harm, especially for vulnerable or potentially disadvantaged patients. OBJECTIVE: To identify harms perceived or experienced by patients, their families, or health-care providers from collection of sociodemographic information during routine health-care visits and to identify best practices for when, by whom and how to collect this information...
October 19, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30334315/translation-transcultural-adaptation-and-validation-of-two-questionnaires-on-shared-decision-making
#12
María Victoria Ruiz Yanzi, Mariela Silvia Barani, Juan Victor Ariel Franco, Fernando Ramón Vazquez Peña, Sergio Adrian Terrasa, Karin Silvana Kopitowski
OBJECTIVE: To translate, transcultural adapt, and validate the "CollaboRATE" measure and the "Ask 3 Questions" intervention in Argentina, allowing us to quantify the degree of use and implementation of shared decision making (SDM). DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: Data were collected in an academic hospital in Buenos Aires. Physician-patient pairs were invited to participate following their scheduled outpatient visits...
October 17, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30318769/identifying-the-processes-of-change-and-engagement-from-using-a-social-network-intervention-for-people-with-long-term-conditions-a-qualitative-study
#13
Ivaylo Vassilev, Anne Rogers, Anne Kennedy, Chad Oatley, Elizabeth James
BACKGROUND: Personal and community networks are recognized as influencing and shaping self-management activities and practices. An acceptable intervention which facilitates self-management by mobilizing network support and improves network engagement has a positive impact on health and quality of life. This study aims to identify the processes through which such changes and engagement take place. METHODS: The study was conducted in the south of England in 2016-2017 and adopted a longitudinal case study of networks design...
October 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30302869/involving-young-people-in-cyberbullying-research-the-implementation-and-evaluation-of-a-rights-based-approach
#14
Rebecca Dennehy, Mary Cronin, Ella Arensman
BACKGROUND: Cyberbullying is an international Public Health concern. Efforts to understand and address it can be enhanced by involving young people. This paper describes a rights-based collaboration with young people in a qualitative exploration of cyberbullying. It describes the establishment, implementation and evaluation of a Young Person's Advisory Group as well as identifying the impact on the research process and the young people involved. METHODS: Sixteen postprimary school students met with researchers on five occasions in a youth centre...
October 10, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30289189/moving-between-ideologies-in-self-management-support-a-qualitative-study
#15
Dagmara Bossy, Ingrid Ruud Knutsen, Anne Rogers, Christina Foss
BACKGROUND: Reforms in current health policy explicitly endorse health promotion through group-based self-management support for people with long-term conditions. Health promotion and traditional medicine are based on different logics. Accordingly, health professionals in health-promoting settings demand the adoption of new practices and ways of thinking. OBJECTIVES: The objective of our study was to investigate how health professionals perceive the health-promoting group-based self-management support that is politically initiated for people with long-term conditions...
October 9, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30369026/intersectoral-strategies-between-health-and-education-for-preventing-adolescent-pregnancy-in-chile-findings-from-a-qualitative-study
#16
Alexandra Obach, Michelle Sadler, Báltica Cabieses
BACKGROUND: In Chile, despite its steady decrease overall, adolescent pregnancy is concentrated in the most vulnerable population. Efforts in intersectoral collaboration between health and education to address the problem are being developed, but they have not been assessed. OBJECTIVE: To describe intersectoral strategies between health and education to address adolescent sexual and reproductive health, prevent adolescent pregnancy, and to explore adolescents' and health professionals' perceptions regarding those strategies...
October 5, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30289592/coproduction-and-health-public-and-clinicians-perceptions-of-the-barriers-and-facilitators
#17
Daniella M Holland-Hart, Samia M Addis, Adrian Edwards, Joyce E Kenkre, Fiona Wood
BACKGROUND: Coproduction is an approach increasingly recognized across public services internationally. However, awareness of the term and the barriers and facilitators to its implementation in the NHS are not widely understood. This study examines clinician and public perceptions of coproduction within the context of the Prudent Healthcare initiative. OBJECTIVES: To provide insights into how coproduction is viewed by clinicians and the public and identify perceived barriers and facilitators to its implementation...
October 5, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30289590/user-involvement-in-digital-health-working-together-to-design-smart-home-health-technology
#18
Alison Burrows, Ben Meller, Ian Craddock, Fiona Hyland, Rachael Gooberman-Hill
BACKGROUND: Public involvement adds value to numerous aspects of health research, yet few studies have attempted to evaluate its impact on research. Evidence of such impact is needed to develop recommendations for best practice and ensure adequate resourcing. AIM: To evaluate public involvement within a large interdisciplinary Science, Technology, Engineering and Mathematics (STEM) research project that focused on digital health. METHODS: The evaluation was conducted with members of the project's Public Advisory Groups (PAG) and with researchers who had participated in involvement activities...
October 5, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30289583/-to-know-or-not-to-know%C3%A2-push-and-pull-in-ever-smokers-lung-screening-uptake-decision-making-intentions
#19
Janet E Tonge, Melanie Atack, Phil A Crosbie, Phil V Barber, Richard Booton, Denis Colligan
BACKGROUND: In the United States, lung cancer screening aims to detect cancer early in nonsymptomatic current and former smokers. A lung screening pilot service in an area of high lung cancer incidence in the United Kingdom has been designed based on United States trial evidence. However, our understanding of acceptability and reasons for lung screening uptake or decline in a United Kingdom nontrial context are currently limited. OBJECTIVE: To explore with ever smokers the acceptability of targeted lung screening and uptake decision-making intentions...
October 5, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30244514/how-does-it-feel-to-be-a-problem-patients-experiences-of-self-management-support-in-new-zealand-and-canada
#20
Nicolette F Sheridan, Timothy W Kenealy, Anita C Fitzgerald, Kerry Kuluski, Annette Dunham, Ann M McKillop, Allie Peckham, Ashlinder Gill
BACKGROUND: The impact of long-term conditions is the "healthcare equivalent to climate change." People with long-term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self-manage. The Practical Reviews in Self-Management Support (PRISMS) taxonomy lists what provider actions might support patient self-management. OBJECTIVE: To offer providers advice on how to support patient self-management...
September 22, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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