scholarly journals Patient involvement at the managerial level: the effectiveness of a patient and family advisory council at a regional cancer centre in Sweden

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mio Fredriksson ◽  
Anton Modigh
Keyword(s):  
Cancer Care ◽  
Public Involvement ◽  
Single Case ◽  
Healthcare Organization ◽  
Advisory Council ◽  
Healthcare Sector ◽  
Care Provision ◽  
Cancer Centre ◽  
Regional Cancer Centre ◽  
Managerial Level

Abstract Background In cancer care as well as other types of treatment and care, little is known about the contribution of Patient and Family Advisory Councils (PFACs) operating at the managerial level in healthcare organizations. The aim of the study was to investigate the effectiveness of a Swedish PFAC operating at the managerial level at one of Sweden’s six regional cancer centres. Methods This was a qualitative, single-case study based on interviews with PFAC participants and meeting minutes from PFAC meetings. These were analysed using a modified version of a framework developed by Abelson et al. to design and evaluate collective involvement processes in the healthcare sector: (i) representation; (ii) information; (iii) process or procedures and (iv) outcomes and decisions. Results The descriptive representation was good regarding geographical location and cancer diagnosis. Information from the regional cancer centre was an important part of the meeting agenda. The procedures encouraged everyone to speak up, and the participants saw the representatives from the regional cancer centre as allies against the hospitals and regions, raising some questions about the PFAC's independence. Regarding outcomes, most participants did not know to what extent their work had led to any improvements in cancer care. However, they still regarded the council as effective, as issues the participants raised were listened to by the representatives from the regional cancer centre and ‘taken further’ in the healthcare organization. Conclusions The participants were satisfied with being listened to, but they found it difficult to know whether their work had led to improvements, in part because they did not know enough about how the healthcare organization worked above the care-provision level. This was a hurdle to achieving change. The study suggests it is more difficult for patients and next of kin to participate at the managerial level, compared to the care-provision level in healthcare systems, where they could potentially influence important aspects of cancer care and policy, since it is at these levels strategic decisions about priorities in cancer care and service configurations are made. This indicates that there is a particular need for guidance and support for patient and public involvement to work successfully at this level, which may include relevant education and training in system knowledge.

Retrospective analysis of mortality within 30 days of systemic anticancer therapy and comparison with a previous audit at an Australian Regional Cancer Centre

2021 ◽  
pp. 107815522110160
Author(s):  
Bernadatte Zimbwa ◽  
Peter J Gilbar ◽  
Mark R Davis ◽  
Srinivas Kondalsamy-Chennakesavan
Keyword(s):  
Checkpoint Inhibitors ◽  
Anticancer Therapy ◽  
Mortality Rates ◽  
Feedback Process ◽  
Time To Death ◽  
Cancer Centre ◽  
Haematology Patients ◽  
The Mean ◽  
Regional Cancer Centre ◽  
Mean Time

Purpose To retrospectively determine the rate of death occurring within 14 and 30 days of systemic anticancer therapy (SACT), compare this against a previous audit and benchmark results against other cancer centres. Secondly, to determine if the introduction of immune checkpoint inhibitors (ICI), not available at the time of the initial audit, impacted mortality rates. Method All adult solid tumour and haematology patients receiving SACT at an Australian Regional Cancer Centre (RCC) between January 2016 and July 2020 were included. Results Over a 55-month period, 1709 patients received SACT. Patients dying within 14 and 30 days of SACT were 3.3% and 7.0% respectively and is slightly higher than our previous study which was 1.89% and 5.6%. Mean time to death was 15.5 days. Males accounted for 63.9% of patients and the mean age was 66.8 years. 46.2% of the 119 patients dying in the 30 days post SACT started a new line of treatment during that time. Of 98 patients receiving ICI, 22.5% died within 30 days of commencement. Disease progression was the most common cause of death (79%). The most common place of death was the RCC (38.7%). Conclusion The rate of death observed in our re-audit compares favourably with our previous audit and is still at the lower end of that seen in published studies in Australia and internationally. Cases of patients dying within 30 days of SACT should be regularly reviewed to maintain awareness of this benchmark of quality assurance and provide a feedback process for clinicians.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

Carcinoma of the vulva: a retrospective review of 37 cases at a regional cancer centre in South India

2004 ◽  
Vol 24 (4) ◽  
pp. 403-407 ◽  
Author(s):  
UD Bafna ◽  
UMA Devi ◽  
KA Naik ◽  
S Hazra ◽  
N Sushma ◽  
...  
Keyword(s):  
Retrospective Review ◽  
South India ◽  
Cancer Centre ◽  
Regional Cancer Centre

scholarly journals Regional cancer centre demonstrates voluntary conformity with the national Radiation Oncology Practice Standards

2015 ◽  
Vol 62 (2) ◽  
pp. 152-159 ◽  
Author(s):  
Stephen Manley ◽  
Andrew Last ◽  
Kenneth Fu ◽  
Stuart Greenham ◽  
Andrew Kovendy ◽  
...  
Keyword(s):  
Radiation Oncology ◽  
Cancer Centre ◽  
Practice Standards ◽  
Regional Cancer Centre ◽  
Oncology Practice

scholarly journals Outcomes of post-prostatectomy radiotherapy at a Regional Cancer Centre

2017 ◽  
Vol 64 (4) ◽  
pp. 259-265 ◽  
Author(s):  
Luke Nicholls ◽  
Amber Winter ◽  
Ashley Harwood ◽  
Ashley Plank ◽  
Preeti Bagga ◽  
...  
Keyword(s):  
Cancer Centre ◽  
Regional Cancer Centre

scholarly journals Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review (Preprint)

2021 ◽  
Author(s):  
Ursula Ellis ◽  
Vanessa Kitchin ◽  
Mathew Vis-Dunbar
Keyword(s):  
Public Involvement ◽  
Geographic Location ◽  
Patient And Public Involvement ◽  
Advisory Council ◽  
Rapid Review ◽  
Medline Search ◽  
Ovid Medline ◽  
Cochrane Database ◽  
Wide Range ◽  
Scoping Reviews

BACKGROUND Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. OBJECTIVE This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. METHODS We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. RESULTS We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). CONCLUSIONS Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

Sign in / Sign up

Export Citation Format

Share Document