Lessons learned from the Canadian cancer registry experience

2017 ◽  
Vol 31 (1) ◽  
pp. 9-12 ◽  
Author(s):  
Maureen MacIntyre ◽  
Cathy MacKay
Keyword(s):  
Data Collection ◽  
Health System ◽  
Patient Outcomes ◽  
Cancer Registry ◽  
Care Delivery ◽  
Population Based ◽  
Lessons Learned ◽  
Opportunities To Learn ◽  
Healthcare Data ◽  
Canadian Health

Health leaders and caregivers are focused on evidence-based data to drive care delivery and practice. Ensuring the health system is functioning effectively and efficiently and that patient outcomes are reaching expected targets are topics that permeate conversations at the local, provincial, and national levels. However, as many leaders have come to understand in recent years, healthcare data collection and producing meaningful, high-quality metrics is a complex set of tasks, requiring its own level of attention and dedicated resources. In the healthcare data realm, there are opportunities to learn from experience. One of these opportunities is the population-based cancer registry, which is one of the oldest examples of standardized data collection in the Canadian health system.

Lessons from the field for community engagement and accountability

2019 ◽  
Vol 24 (4) ◽  
pp. 261-266 ◽  
Author(s):  
Alex Berland
Keyword(s):  
Health System ◽  
Community Engagement ◽  
Care Delivery ◽  
Lessons Learned ◽  
Process Of Care ◽  
System Transformation ◽  
Content Type ◽  
The Sustainable Development ◽  
Development Goals ◽  
Corporate Social

Purpose In Canada, community engagement and accountability are a political imperative, resulting in an omnipresent program with varied opportunities for public participation. The purpose of this paper is to promote leadership and commitment for health system transformation that truly benefits communities. Design/methodology/approach This paper is based on the author’s experience with many engagement and accountability activities, applied in varied settings, for purposes such as evaluation, planning, policy making and system transformation. The specific context is generalized with international experiences and references. Findings The “lessons learned” are based on practical considerations with relevance for both novice and experienced practitioners: clarifying principles, processes and purposes at the outset; using effective leadership to achieve the desired impact; using a variety of methods to engage communities; clarifying engagement and accountability roles precisely; measuring things that are meaningful; and consulting with internal as well as external communities. Also, community leaders should recognize effort as well as results. Research limitations/implications Commitment to engagement and accountability is commendable – but is it enough? The paper concludes by looking beyond health system impacts to propose a broader systems perspective. If clinical governors want to use engagement and accountability to achieve “total value” for their communities, they will need to demonstrate as leaders that they are committed to long-term thinking and broad social goals. Originality/value Too much focus on the process of care may mask accountability for reporting outcomes or systemic impact. The sustainable development goals highlight the need for systems thinking and public expectations include corporate social responsibility. As shown in the examples cited, a deeper commitment to engagement and accountability requires looking beyond care delivery to social determinants and to systemic impacts of the health care industry itself.

scholarly journals Cohort profile: the Martinique Cancer Registry and the quality of life prostate cancer cohort (QoL Prostate-MQ): challenges and prospects for reducing disparities in the Caribbean

BMJ Open ◽  
2018 ◽  
Vol 8 (7) ◽  
pp. e021540 ◽  
Author(s):  
Clarisse Joachim ◽  
Jacqueline Veronique-Baudin ◽  
Thierry Almont ◽  
Stephen Ulric-Gervaise ◽  
Jonathan Macni ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Patient Outcomes ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Population Based ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
The Caribbean

PurposeRecording cancer data in cancer registries is essential for producing reliable population-based data for service planning, monitoring and evaluation. Prostate cancer (PCa) remains the most frequent type of cancer in terms of incidence and mortality in men in the Caribbean. The quality of life PCa cohort will assess quality of life and patient outcomes in Martinique using a digital platform for patient-reported outcome measures.ParticipantsThe Martinique Cancer Registry database is the largest clinical database among the French population-based cancer registries in the Caribbean, including more than 38 000 cancer cases, with 1650 new cancer cases per year, including 550 new PCa cases per year (2010–2014 latest period). In 2018, follow-up will include vital status, assessment of quality of life with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ) Core 30 and the Prostate cancer module QLQ-PR25. Urinary incontinence and erectile dysfunction recorded prior to treatment will be analysed 1 and 5 years after treatment.Findings to dateThe registry includes data on circumstances of diagnosis, clinical stage at diagnosis. For PCa, the registry includes blood prostate-specific antigen level at the time of diagnosis, Gleason score and primary treatment.Future plansFurther studies will provide detailed data regarding the quality of diagnosis and management of patients with PCa in Martinique; analysing quality of care will be the next challenge.Quality of life and patient outcomes will be evaluated using a digital platform for patient-reported outcome measurement and electronic records.

scholarly journals The impact of the COVID-19 pandemic on California farmworkers: Better local data collection and reporting will improve strategic response

2020 ◽  
Vol 36 (4) ◽  
pp. 867-898
Author(s):  
Edward Kissam
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Health System ◽  
Public Health System ◽  
Lessons Learned ◽  
San Joaquin Valley ◽  
System Response ◽  
Local Data ◽  
Wide Range ◽  
The Impact

Providing the public with relevant and reliable statistical information about the impact of COVID-19 on vulnerable populations is a crucial weapon in effective public health system response. This article examines the reporting challenges confronted by local public health agencies based on a case study of farmworker communities of the San Joaquin Valley, Eastern Coachella Valley, and Salinas Valley. The analysis includes a quantitative estimate of the impact COVID-19 has on farmworker households and highlights how socioeconomic factors and housing conditions give rise to health disparities. The importance of local data collection and reporting as the foundation for a national epidemiological tracking system is emphasized. Current shortcomings stemming from flawed national guidance and local political pressures are noted. The discussion includes detailed recommendation for improved reporting including: more systematic tabulations of available data, an expanded set of indicators to monitor public health system response, promising approaches to improve representativeness of test-derived data on COVID-19 by making it easier to access testing and support services, coupled with messaging to broaden farmworkers’ and other socio-politically marginalized populations’ willingness to seek testing. Understanding the challenges faced and lessons learned in the San Joaquin Valley region have practical implications for a wide range of countries.

scholarly journals SP3-79 Audit of a nationwide pathology-based cancer registry in Iran and lessons learned from successful population-based cancer registries worldwide

2011 ◽  
Vol 65 (Suppl 1) ◽  
pp. A430-A430
Author(s):  
K. Zendehdel ◽  
G. Keshtmand ◽  
Z. Sedighi ◽  
J. Hassanloo ◽  
A. Nahvijou ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Cancer Registries ◽  
Population Based ◽  
Lessons Learned

scholarly journals Cohort Profile: HealthWise Wales. A research register and data collection and analysis platform with linkage to NHS datasets in Wales

2019 ◽  
Author(s):  
Lisa Hurt ◽  
Pauline Ashfield-Watt ◽  
Julia Townson ◽  
Luke Heslop ◽  
Lauren Copeland ◽  
...  
Keyword(s):  
Data Collection ◽  
Cost Effective ◽  
Complete Information ◽  
Epidemiological Studies ◽  
Population Based ◽  
Lifestyle Factors ◽  
Online Data ◽  
Healthcare Data ◽  
Demographic Subgroups ◽  
Analysis Platform

AbstractPurposeRecruitment and follow-up in epidemiological studies is challenging, time-consuming and expensive. Combining online data collection with a register of individuals who agree to be contacted with information on research opportunities provides an efficient, cost-effective platform for population-based research. HealthWise Wales (HWW) aims to support researchers by recruiting a cohort of “research-ready” individuals; advertising relevant studies to these participants; providing access to cohort data for secondary analyses; and supporting data collection on specific topics that can be linked with healthcare data.ParticipantsAdults (aged 16 and above) living or receiving their healthcare in Wales are eligible for inclusion. Participants consent to be followed-up every 6 months; for their details to be used to access their routinely-collected NHS records for research purposes; to be contacted about research projects in which they could participate; and to be informed about involvement or engagement opportunities. Data are collected using a web-based application, with new questionnaires added every six months. Data collection on socio-demographic and lifestyle factors is repeated at two-to-three year intervals. Recruitment is ongoing, with 21,779 active participants (alive and currently registered).Findings to date99% of participants have complete information on age and sex, and 64% have completed questionnaires on socio-demographic and lifestyle factors. These data can be linked with national health databases within the Secure Anonymised Information Linkage (SAIL) databank, with 93% of participants matching a record in SAIL. HWW has facilitated recruitment of 43,826 participants to 15 different studies.Future plansThe medium-term goal for the project is to enrol at least 50,000 adults. Recruitment strategies are being devised to achieve a study sample that closely models the population of Wales, with sufficient numbers in socio-demographic subgroups to allow for the selection of populations for research from those groups. Potential bio-sampling methods are also currently being explored.

scholarly journals Lessons learned about appendiceal neuroendocrine neoplasms from data analysis of the Belgian Cancer Registry 2010-2015

2021 ◽  
Vol 84 (3) ◽  
Author(s):  
S Ribeiro ◽  
F De Maeyer ◽  
M De Man ◽  
S Carton ◽  
P.J. Cuyle ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Population Based ◽  
Lessons Learned ◽  
Biological Behavior ◽  
Neuroendocrine Neoplasms ◽  
Malignant Neoplasms ◽  
Medical Procedures ◽  
Population Based Study ◽  
Number Of Patients ◽  
Insurance Database

Background and study aims : Appendiceal neuroendocrine neo-plasms (aNENs) are a diverse group of malignant neoplasms ofvarying biological behavior for which information about manage-ment and outcome is sparse, with the majority of available studiesbeing retrospective, including only a limited number of patients,and therefore not necessarily reflecting the reality in the community.In the present study clinical, epidemiological and pathological dataof appendiceal neuroendocrine neoplasms in Belgium is providedand compared with current literature. Methods : A population-based study was conducted by linkingdata of the Belgian Cancer Registry with medical procedures inthe Belgian Health Insurance database for patients diagnosed withaNEN between 2010 and 2015. Results : We found an aNEN incidence of 0.97/100.000 personyears in Belgium. Neuroendocrine carcinoma of the appendix arerare. Most appendiceal neuroendocrine tumors (aNETs) are smallG1 tumors. Positive lymph nodes are often found in tumors largerthan 2cm, especially aNET G2. Conclusion : A rapid uptake of changing classifications was seenin the community. However, systematic reporting of risk factorsfor small aNEN can still be improved and should be stimulated.In 9% of cases, reclassifications had to be made, pointing out thatin a retrospective analysis, original pathological reports should bechecked for specific parameters, before reliable conclusions can be drawn.

scholarly journals Towards Patient-Oriented Diabetes Care: Results from Two KORA Surveys in Southern Germany

2015 ◽  
Vol 2015 ◽  
pp. 1-14 ◽  
Author(s):  
Michaela Schunk ◽  
Renée Stark ◽  
Peter Reitmeir ◽  
Christa Meisinger ◽  
Rolf Holle
Keyword(s):  
Patient Outcomes ◽  
Diabetes Care ◽  
Care Delivery ◽  
Population Based ◽  
Foot Care ◽  
Self Monitoring ◽  
Southern Germany ◽  
Care Processes ◽  
Medical Examinations

Objective. This study aims to examine the relationship of diabetes care processes and patient outcomes with an expanded set of indicators regarding patient-oriented care delivery, such as treatment satisfaction, the quality of patient-physician relationship, and a wider range of patient outcomes such as self-management, health behaviour, disease-related burden, and health-related quality of life (HRQL).Methods. The study population consisted of 486 participants with type 2 diabetes in two population-based follow-up surveys, conducted in 2003 to 2005 and 2006 to 2008 in Southern Germany. Data were self-reported and questionnaire-based, including the SF-12 for HRQL. Multiple regression models were used to identify associations between care processes and outcomes with adjustment for confounders.Results. Frequent medical examinations increased the likelihood of self-monitoring activities, such as foot care. A positive patient experienced relationship with their physician is associated with higher adherence to medical recommendations, such as medication intake, and the score of the SF-12 mental component. Participants with diabetes-related complications reported higher levels of medical examinations and multiprofessional care.Conclusions. Indicators of patient-oriented care should become an indispensable part of diabetes clinical practice guidelines with the aim of striving for more effective support of patients.

scholarly journals EP.TU.292Role of varying cultural backgrounds on patient safety in modern health care (NHS)

2021 ◽  
Vol 108 (Supplement_7) ◽  
Author(s):  
Sangara Narayanan Narayanasamy ◽  
Pradeep Thomas
Keyword(s):  
Health Care ◽  
Multicultural Education ◽  
Health System ◽  
Cultural Competency ◽  
Patient Outcomes ◽  
Health Workers ◽  
Clinical Skills ◽  
Care Delivery ◽  
Organizational Outcomes ◽  
Assessment Tools

Abstract Introduction Patient’s safety and quality health care are prime motive in today’s health system. To avoid incidents on the minority, safe health system has to function linking different cultures and diversity. Cultural competency is applying clinical skills, knowledge and attitude towards the betterment and clinical safety of minority patients. Cultural competency Culture is defined as traditions and norms within group of people, linked by similar beliefs, behaviour,food habits and moral values. Ethno-pharmacology is the branch of science analysing the variations and effect of medications on different group of people. Cultural competency expanded as multicultural education, including patient outcomes, provider outcomes and health service and organizational outcomes (Vega, 2005; Srivastava, 2008). Current debate is that could cultural competency reduce the racial discrimination (Drevdahl et al., 2008). Cultural competency and outcomes Patient outcomes are measured in terms of physiological parameters (Hawthrone et al., 2008) and organisational outcomes include multilingual health workers, translators and help desks. (Fisher et al., 2007). Workshop, conferences, and training programs, orientation programs, peer education, interpreters, and meetings improve health care delivery. Conclusion Provider and organizational outcomes show moderate improvements in health services, whereas weak evidence of improvements in patient outcome. Henderson et al and Fisher et al reported that health workers trained culturally are most effective in delivering care. Recommendations Appropriate terminology and methods of interventions has to be formulated. Periodic reviews and new assessment tools has to be done. Systematic and organizational approach with cost effectiveness to be handled to improve the cultural competency.

scholarly journals Mental Health Community and Health System Issues in COVID-19: Lessons from Academic, Community, Provider and Policy Stakeholders

2020 ◽  
Vol 30 (4) ◽  
pp. 695-700 ◽  
Author(s):  
Armen C. Arevian ◽  
Felica Jones ◽  
Elizabeth M. Moore ◽  
Nichole Goodsmith ◽  
Sergio Aguilar-Gaxiola ◽  
...  
Keyword(s):  
Public Health ◽  
Mental Health ◽  
Health System ◽  
Social Determinants ◽  
Health Care Services ◽  
Care Delivery ◽  
Public Mental Health ◽  
Academic Community ◽  
Lessons Learned ◽  
Services Delivery

The coronavirus pandemic of 2019 (COVID-19) has created unprecedented changes to everyday life for millions of Americans due to job loss, school clo­sures, stay-at-home orders and health and mortality consequences. In turn, physicians, academics, and policymakers have turned their attention to the public mental health toll of COVID-19.This commentary reporting from the field integrates perceptions of academic, com­munity, health system, and policy leaders from state, county, and local levels in com­menting on community mental health needs in the COVID-19 pandemic. Stakeholders noted the broad public health scope of mental health challenges while express­ing concern about exacerbation of existing disparities in access and adverse social determinants, including for communities with high COVID-19 infection rates, such as African Americans and Latinos. They noted rapid changes toward telehealth and remote care, and the importance of understand­ing impacts of changes, including who may benefit or have limited access, with implica­tions for future services delivery. Needs for expanded workforce and training in mental health were noted, as well as potential public health value of expanding digital resources tailored to local populations for enhancing resilience to stressors.The COVID-19 pandemic has led to changes in delivery of health care services across populations and systems. Concerns over the mental health impact of COVID-19 has enhanced interest in remote mental care delivery and preventive services, while being mindful of potential for enhanced disparities and needs to address social determinants of health. Ongoing quality improvement across systems can integrate lessons learned to enhance a public mental well-being.Ethn Dis. 2020;30(4):695-700; doi:10.18865/ed.30.4.695

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