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Background. Cancer diagnosis is a complex and multifaceted process that can be stressful and anxiety-provoking for patients. Evidence-based tools and information aids that can be used for guiding and supporting patients during cancer investigations and after diagnosis are limited. This paper presents a user-centred codesign project that aims to develop a cancer pathway support tool for patients, carers, and healthcare professionals. Method. A mixed-method codesign approach was used including prototype development (January–March 2022), three online codesign workshops (April–June 2022), one-to-one feedback, and beta testing informed by the standardised Theoretical Framework of Acceptability (TFA) questionnaire (July–October 2022). Nine individuals with lived experience of cancer contributed to the project and are referred to as codesigners. Results. The codesigners valued the potential importance of a tool that can be used by the patients and carers if they want specific information about cancer investigations, diagnosis, and treatment. The ability to select what they need as opposed to long leaflets and generating their own questions for the healthcare providers were highlighted as important aspects of improving patient care. The tool was collectively designed to provide clear definitions of the cancer care pathway and easily accessible links from trusted resources and includes practical information to minimise the burden that can be experienced from preparation for appointments and tests. Beta testing results with a small sample of potential users including patients, carers, and healthcare providers (n = 23) showed high acceptability of the guide (range = 7–35, mean = 28.52, and standard deviation = 3.88) based on the TFA questionnaire. Conclusion. A cancer pathway support tool called "Your Cancer Pathway Support Guide (YCPSG)" was developed as a result of an iterative codesign process aiming to improve patient experience and outcomes for people referred on a suspected cancer pathway or who have been diagnosed with cancer. The tool provides information and support in both digital and PDF formats. Further studies are needed to evaluate the potential impact of "Your Cancer Pathway Support Guide" on patient outcomes and experience and the wider system. [ABSTRACT FROM AUTHOR]

Background: The potential of the electronic health record to support safety netting has been recognised and a number of electronic safety-netting (E-SN) tools developed. Aim: To establish the most important features of E-SN tools. Design & setting: User-experience interviews followed by a Delphi study in a primary care setting in the UK. Method: The user-experience interviews were carried out remotely with primary care staff who had trialled the EMIS E-SN toolkit for suspected cancer. An electronic modified Delphi approach was used, with primary care staff involved in safety netting in any capacity, to measure consensus on tool features. Results: Thirteen user-experience interviews were carried out and features of E-SN tools seen as important formed the majority of the features included in the Delphi study. Three rounds of Delphi survey were administered. Sixteen responders (64%) completed all three rounds, and 28 out of 44 (64%) features reached consensus. Primary care staff preferred tools that were general in scope. Conclusion: Primary care staff indicated that tools that were not specific to cancer or any other disease, and had features that promoted their flexible, efficient, and integrated use, were important. However, when the important features were discussed with the patient and public involvement (PPI) group, they expressed disappointment that features they believed would make E-SN tools robust and provide a safety net that is difficult to fall through did not reach consensus. The successful adoption of E-SN tools will rely on an evidence base of their effectiveness. Efforts should be made to assess the impact of these tools on patient outcomes. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has profoundly affected UK primary care, and as a result the route to cancer diagnosis for many patients. Aim: To explore how the pandemic affected primary care practice, in particular cancer suspicion, referral, and diagnosis, and how this experience evolved as the pandemic progressed. Design and setting: Seventeen qualitative interviews were carried out remotely with primary care staff. Method: Staff from practices in England that expressed an interest in trialling an electronic safety-netting tool were invited to participate. Remote, semi-structured interviews were conducted from September 2020 to March 2021. Data analysis followed a thematic analysis and mind-mapping approach. Results: The first lockdown was described as providing time to make adjustments to allow remote and minimal-contact consultations but caused concerns over undetected cancers. These concerns were realised in summer and autumn 2020 as the participants began to see higher rates of late-stage cancer presentation. During the second and third lockdowns patients seemed more willing to consult. This combined with usual winter pressures, demands of the vaccine programme, and surging levels of COVID-19 meant that the third lockdown was the most difficult. New ways of working were seen as positive when they streamlined services but also unsafe if they prevented GPs from accessing all relevant information and resulted in delayed cancer diagnoses. Conclusion: The post-pandemic recovery of cancer care is dependent on the recovery of primary care. The COVID-19 pandemic has highlighted and exacerbated vulnerabilities in primary care but has also provided new ways of working that may help the recovery. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the 'Call for a Kit' health promotion intervention that was initiated in Lancashire, England to improve bowel cancer screening uptake. Methods: Within the intervention, screening non-responders are called and invited to attend a consultation with a health promotion team member at their primary care practice. In this audit, we analysed the proportion of those contacted who attended the in-person clinic versus those who received a phone consultation, the number returning a test kit from in-person versus phone consultations, and the extent to which test kit return was moderated by sociodemographic characteristics. Results: In 2019, 68 practices participated in the intervention which led to 10,772 individuals being contacted; 2464 accepted the invitation to an in-person consultation, of whom 1943 attended. A further 1065 agreed to and attended a consultation over the phone. The 3008 consultations resulted in 2890 test kits being ordered, of which 1608 (55.6%) were returned. The intervention therefore yielded a 14.9% response rate in the total cohort; 71.5% of test kits came from individuals attending the in-person consultation. Women and those registered with a practice in socioeconomically deprived areas were less likely to return the test kit. Individuals with a black, mixed or a non-Indian/Pakistani Asian ethnic background were significantly more likely to accept the offer of an in-person consultation and return the test kit. Conclusion: Our analysis demonstrated the strong likelihood of people returning a test kit after an in-person appointment but also the usefulness of using phone consultations as a safety net for people unable or unwilling to attend in-person clinics. [ABSTRACT FROM AUTHOR]

An invitation to cancer screening with a single (fixed) appointment time has been shown to be a more effective way at increasing uptake compared with an invitation with an open (unscheduled) appointment. The present study tested whether offering more than one fixed appointment could further enhance this effect or be detrimental to people's intention. Experimental online hypothetical vignette survey. 1,908 respondents who stated that they did not intend to participate in Bowel Scope Screening (BSS) were offered either one, two, four or six hypothetical fixed BSS appointments (all of which covered the same time of day to control for individual preferences). Participants who were given more than one appointment to choose from were less likely to intend to book an appointment despite multiple appointments being perceived as more convenient. These results suggest that when it comes to offering people appointments for cancer screening, less (choice) is more, at least if alternatives fail to serve an inherent preference. [ABSTRACT FROM AUTHOR]

Introduction Safety-netting in primary care is the best practice in cancer diagnosis, ensuring that patients are followed up until symptoms are explained or have resolved. Currently, clinicians use haphazard manual solutions. The ubiquitous use of electronic health records provides an opportunity to standardise safety-netting practices. A new electronic safety-netting toolkit has been introduced to provide systematic ways to track and follow up patients. We will evaluate the effectiveness of this toolkit, which is embedded in a major primary care clinical system in England:Egerton Medical Information System(EMIS)-Web. Methods and analysis We will conduct a stepped-wedge cluster RCT in 60 general practices within the RCGP Research and Surveillance Centre (RSC) network. Groups of 10 practices will be randomised into the active phase at 2-monthly intervals over 12 months. All practices will be activated for at least 2 months. The primary outcome is the primary care interval measured as days between the first recorded symptom of cancer (within the year prior to diagnosis) and the subsequent referral to secondary care. Other outcomes include referrals rates and rates of direct access cancer investigation. Analysis of the clustered stepped-wedge design will model associations using a fixed effect for intervention condition of the cluster at each time step, a fixed effect for time and other covariates, and then include a random effect for practice and for patient to account for correlation between observations from the same centre and from the same participant. Ethics and dissemination Ethical approval has been obtained from the North West—Greater Manchester West National Health Service Research Ethics Committee (REC Reference 19/NW/0692). Results will be disseminated in peer-reviewed journals and conferences, and sent to participating practices. They will be published on the University of Oxford Nuffield Department of Primary Care and RCGP RSC websites. [ABSTRACT FROM AUTHOR]

Background: There has been interest in using the non-invasive, home-based quantitative faecal immunochemical test (FIT) to rule out colorectal cancer (CRC) in high-risk symptomatic patients. Aim: To elicit public preferences for FIT versus colonoscopy (CC) and its delivery in primary care. Design & setting: A cross-sectional online survey in England. Method: A total of 1057 adults (without CRC symptoms and diagnosis) aged 40-59 years were invited from an English online survey panel. Responders were asked to imagine they had been experiencing CRC symptoms that would qualify them for a diagnostic test. Participants were presented with choices between CC and FIT in ascending order of number of CRCs missed by FIT (from 1-10%). It was measured at what number of missed CRCs responders preferred CC over FIT. Results: While 150 participants did not want either of the tests when both missed 1% CRCs, the majority (n = 741, 70.0%) preferred FIT to CC at that level of accuracy. However, this preference reduced to 427 (40.4%) when FIT missed one additional cancer. Women were more likely to tolerate missing CRC when using FIT. Having lower numeracy and perceiving a higher level of risk meant participants were less likely to tolerate a false negative test. Most of those who chose FIT preferred to return it by mail (62.2%), to be informed about normal test results by letter (42.1%), and about abnormal test results face to face (32.5%). Conclusion: While the majority of participants preferred FIT over CC when both tests had the same sensitivity, tolerance for missed CRCs was low. [ABSTRACT FROM AUTHOR]

Objectives: A large proportion of women have a preference for a same-gender endoscopy practitioner. We tested how information about practitioner gender affected intention to have bowel scope screening in a sample of women disinclined to have the test. Methods: In an online experimental survey, women aged 35–54 living in England who did not intend to participate in bowel scope screening (N = 1060) were randomised to one of four experimental conditions: (1) control (practitioner's gender is unknown), (2) opposite-gender (male practitioner by default), (3) same gender (female practitioner by default), and (4) active choice (the patient could choose the gender of the practitioner). Intention was measured following the interventions. Results: Of 1010 (95.3%) women who completed the survey, most were White-British (83.6%), and working (63.3%). Compared with control, both active choice and same-gender conditions increased intention among disinclined women (9.3% vs. 16.0% and 17.9%; OR: 1.85; 95% CI: 1.07–3.20 and OR: 2.07; 95% CI: 1.23–3.50). There were no differences in intention between the opposite-gender and control conditions (9.8% vs. 9.3%; OR: 1.06; 95% CI: 0.60–1.90) or the active choice and same-gender conditions (16.0% vs. 17.9%: OR: 0.89; 95% CI: 0.55–1.46, using same gender as baseline). Conclusions: Offering disinclined women a same-gender practitioner, either by choice or default, increased subsequent intention, while an opposite gender default did not negatively affect intention. Reducing uncertainty about gender of practitioner could positively affect uptake in women, and should be tested in a randomised controlled trial. [ABSTRACT FROM AUTHOR]

Objectives In July 2017, UK National Institute for Health and Care Excellence (NICE) published a diagnostic guidance (DG30) recommending the use of faecal immunochemical tests (FITs) for symptomatic patients who do not meet the urgent referral pathway for suspected colorectal cancer (CRC). We assessed general practitioners' (GP) awareness of DG30 in primary care 6 months after its publication. Design and setting Cross-sectional online survey of GPs hosted by an English panel of Primary health care professionals. Participants In December 2017, 1024 GPs registered on an online panel (M3) based in England took part in an online survey. Outcomes and variables We investigated a number of factors including previous experience of using FIT and guaiac faecal occult blood tests (FOBTs), the number of urgent referrals for CRC that GPs have made in the last year and their sociodemographic and professional characteristics that could be associated with their self-reported awareness of the FIT diagnostic guidance. Results Of the 1024 GPs who completed the survey, 432 (42.2%) were aware of the current recommendation but only 102 (10%) had used it to guide their referrals. Awareness was lowest in North West England compared with London (30.5% vs 44.9%; adjusted OR: 0.55, 95% CI 0.33 to 0.92). Awareness of the FIT guidance was positively associated with test usage after the NICE update (adjusted OR: 13.00, 95% CI 6.87 to 24.61) and having specialist training (adjusted OR: 1.48, 95% CI 1.05 to 2.08). The number of urgent referrals, the previous use of FOBt, GPs' age and gender, work experience and practice size (both in terms of the number of GPs or patients at the practice) were not associated with awareness. Conclusions Less than half of GPs in this survey recognised the current guidance on the use of FIT. Self-reported awareness was not systematically related to demographic of professional characteristics. [ABSTRACT FROM AUTHOR]

Abstract Background The initial roll-out of the English Bowel (Colorectal) Cancer Screening programme, during 2006 and 2009, found uptake to be low (54%) and socially graded. The current analysis used data from 2010 to 2015 to test whether uptake is increasing and becoming less socially graded over time. Methods Postcode-derived area-level uptake of 4.4 million first-time invitees, stratified by gender and the year of the first invitation (2010–2015), was generated using the National Bowel Cancer Screening System. Data were limited to people aged 60–64 years. Binomial regression tested for variations in uptake by the year of invitation, gender, region, area-based socio-economic deprivation and area-based ethnic diversity. Results Overall, the first-time colorectal cancer (CRC) screening uptake across 6 years was 52% (n = 2,285,996/4,423,734) with a decline between 2010 and 2015 (53%, 54%, 52%, 50%, 49%, 49% respectively). Uptake continued to be socially graded between the most and the least deprived area-level socio-economic deprivation quintiles (43% vs 57%), the most and the least area-based ethnic diversity quintiles (41% vs 56%) and men and women (47% vs 56%). Multivariate analysis demonstrated the effects of year, deprivation, ethnicity and gender on uptake. The effect of deprivation was more pronounced in the most deprived area quintile between men and women (40% vs 47%) than the least deprived area quintile (52% vs 62% respectively). Conclusion We did not find evidence of change in uptake patterns in CRC screening since its initial launch 10 years ago. The programme is unlikely to realise its full public health benefits and is en route to widening inequalities in CRC outcomes. Highlights • Colorectal cancer screening uptake among first-time invitees remains low at 52%. • There is a worrying reduction in colorectal cancer screening uptake between 2010 and 2015. • There is no evidence that the social inequalities in uptake have reduced over time. • There is no evidence of diffusion of innovation in colorectal cancer screening uptake in England. [ABSTRACT FROM AUTHOR]

Background: There is increasing interest in using a quantitative faecal immunochemical test (FIT) to rule out colorectal cancer (CRC) in patients with high-risk symptoms in primary care.Aim: This study aimed to investigate GPs' attitudes and willingness to use a FIT over an urgent 2-week wait (2WW) referral.Design and Setting: A cross-sectional online survey involving 1024 GPs working across England.Method: Logistic regression models were used to explore the likelihood of GPs using a FIT instead of a 2WW referral, and reported using odds ratios (ORs) and 95% confidence intervals (95% CIs).Results: Just over one-third of GPs (n = 365) preferred to use a FIT as a rule-out test over a 2WW referral. GPs were more willing if they were: aged 36-45 years (OR 1.59 [95% CI = 1.04 to 2.44]); 46-55 years (OR 1.99 [95% CI = 1.14 to 3.47]); thought a FIT was highly accurate (OR 1.63 [95% CI = 1.16 to 2.29]); thought patients would benefit compared with having a colonoscopy (OR 2.02 [95% CI = 1.46 to 2.79]); and were highly confident about discussing the benefits of a FIT (OR 2.14 [95% CI = 1.46 to 3.16]). GPs were less willing if they had had >10 urgent referrals in the past year (OR 0.62 [95% CI = 0.40 to 0.94]) and thought that longer consultations would be needed (OR 0.61 [95% CI = 0.44 to 0.83]).Conclusion: The study findings suggest that the acceptability of using a FIT as a rule-out test in primary care is currently low, with less than half of GPs who perceived the test to be accurate preferring it over colonoscopy. Any potential guideline changes recommending a FIT in patients with high-risk symptoms, instead of urgent referral to rule out CRC, are likely to require intensive supporting educational outreach to increase GP confidence in the accuracy and application of a FIT in this context. [ABSTRACT FROM AUTHOR]

Objectives In examining informed choice in cancer screening, we investigated public awareness that some screening programmes aim to prevent cancer, while others seek to detect cancer at an early stage. Methods A population-based survey of adults aged 50–70 in England (n = 1433), including data on demographic characteristics and screening experience. Participants were asked to select the main purpose of cervical, breast, and colorectal cancer screening (both faecal occult blood testing and flexible sigmoidoscopy). Results Across all four screening programmes, most people thought the main aim was to catch cancer early (71–78%). Only 18 and 14% knew that cervical screening and flexible sigmoidoscopy, respectively, are primarily preventive. Knowledge of the preventive aspect of these two programmes was low across the board, with few demographic patterns. By contrast, 78 and 73% of the sample were aware that breast screening and the faecal occult blood test, respectively, predominantly aim to detect cancer early. For these programmes, accurate knowledge was socially graded, lower in ethnic minority groups, and positively associated with previous participation in the programmes. Conclusions Our findings suggest that although awareness of the purpose of early detection screening is high, awareness that screening can prevent cancer is low across all demographic groups. Understanding the purpose of screening is a key aspect of informed choice but despite current communication strategies highlighting these differences, people do not seem to have a nuanced understanding of these differing aims. Our findings may be indicative of a broader public scepticism about the preventability of cancer. [ABSTRACT FROM AUTHOR]

Background: Participation in case-control studies is crucial in epidemiological research. The self-sampling bias, low response rate, and poor recruitment of population representative controls are often reported as limitations of case-control studies with limited strategies to improve participation. With greater use of web-based methods in health research, there is a further need to understand the effectiveness of different tools to enhance informed decision-making and willingness to take part in research.Objective: This study tests whether the inclusion of an animated decision aid in the recruitment page of a study website can increase participants' intentions to volunteer as controls.Methods: A total of 1425 women were included in a web-based experiment and randomized to one of two experimental conditions: one in which they were exposed to a simulated website that included the animation (animation; n=693, 48.6%), and one in which they were exposed to the simulated website without the animation (control; n=732, 51.4%). The simulated website was adapted from a real website for a case-control study, which invites people to consider taking part in a study that investigates differences in purchasing behaviors between women with and without ovarian cancer and share their loyalty card data collected through 2 high street retailers with the researchers. After exposure to the experimental manipulation, participants were asked to state (1) their intention to take part in the case-control study, (2) whether they would be willing to share their loyalty card for research, and (3) their willingness to be redirected to the real website after completing the survey. Data were assessed using ordinal and binary logistic regression, reported in percentages (%), adjusted odds ratio (AOR), and 95% confidence intervals.Results: Including the animation in the simulated website did not increase intentions to participate in the study (AOR 1.09; 95% CI 0.88-1.35) or willingness to visit the real study website after the survey (control 50.5% vs animation 52.6%, AOR 1.08; 95% CI 0.85-1.37). The animation, however, increased the participants' intentions to share the data from their loyalty cards for research in general (control 17.9% vs animation 26%; AOR 1.64; 95% CI 1.23-2.18).Conclusions: While the results of this study indicate that the animated decision aid did not lead to greater intention to take part in our web-based case-control study, they show that they can be effective in increasing people's willingness to share sensitive data for health research. [ABSTRACT FROM AUTHOR]

Background: Screening with the guaiac faecal occult blood test (gFOBt) is associated with improved colorectal cancer (CRC) survival, and is offered biennially to men and women aged 60-74 years in England's national Bowel Cancer Screening Programme (BCSP). Uptake of the gFOBt is low, with only 54 % of the eligible population completing the test. Text-message reminders could improve uptake of gFOBt.Methods/design: This paper describes the protocol for a randomised controlled trial, which will examine the effectiveness of a text-message reminder to promote uptake of gFOBt screening in the BCSP. Individual mobile telephone data from 180 general practices in London with existing mobile-health services will be linked to the national BCSP information system via a secure on-line network. All screening-eligible adults registered with a participating practice will be randomised, to receive either usual care (N = 1600) or usual care plus a text-message reminder to self-complete and return their kit eight weeks after their initial invitation (N = 1600). The primary outcome will be the proportion of individuals who return an adequately completed gFOBt kit within 18 weeks of the initial invitation. Differences in uptake between groups will be evaluated using a logistic regression analysis, adjusting for individual-level and area-level socio-demographic variables.Discussion: This will be the first large-scale randomised trial of a text-message reminder in a national screening programme for CRC. If effective, this study provides a cost-effective means to promote uptake of CRC screening in an organised programme.Trial Registration: Current Controlled Trials ISRCTN70904476 (18/09/2015). [ABSTRACT FROM AUTHOR]

Background: Social media is rapidly becoming the primary source to disseminate invitations to the public to consider taking part in research studies. There is, however, little information on how the contents of the advertisement can be communicated to facilitate engagement and subsequently promote intentions to participate in research., Objective: This paper describes an experimental study that tested different behavioral messages for recruiting study participants for a real-life observational case-control study., Methods: We included 1060 women in a web-based experiment and randomized them to 1 of 3 experimental conditions: standard advertisement (n=360), patient endorsement advertisement (n=345), and social norms advertisement (n=355). After seeing 1 of the 3 advertisements, participants were asked to state (1) their intention to take part in the advertised case-control study, (2) the ease of understanding the message and study aims, and (3) their willingness to be redirected to the website of the case-control study after completing the survey. Individuals were further asked to suggest ways to improve the messages. Intentions were compared between groups using ordinal logistic regression, reported in percentages, adjusted odds ratio (aOR), and 95% CIs., Results: Those who were in the patient endorsement and social norms-based advertisement groups had significantly lower intentions to take part in the advertised study compared with those in the standard advertisement group (aOR 0.73, 95% CI 0.55-0.97; P=.03 and aOR 0.69, 95% CI 0.52-0.92; P=.009, respectively). The patient endorsement advertisement was perceived to be more difficult to understand (aOR 0.65, 95% CI 0.48-0.87; P=.004) and to communicate the study aims less clearly (aOR 0.72, 95% CI 0.55-0.95; P=.01). While the patient endorsement advertisement had no impact on intention to visit the main study website, the social norms advertisement decreased willingness compared with the standard advertisement group (157/355, 44.2% vs 191/360, 53.1%; aOR 0.74, 95% CI 0.54-0.99; P=.02). The majority of participants (395/609, 64.8%) stated that the messages did not require changes, but some preferred clearer (75/609, 12.3%) and shorter (59/609, 9.7%) messages., Conclusions: The results of this study indicate that adding normative behavioral messages to simulated tweets decreased participant intention to take part in our web-based case-control study, as this made the tweet harder to understand. This suggests that simple messages should be used for participant recruitment through Twitter (subsequently rebranded X)., (©Sandro T Stoffel, Jing Hui Law, Robert Kerrison, Hannah R Brewer, James M Flanagan, Yasemin Hirst. Originally published in JMIR Formative Research (https://formative.jmir.org), 05.02.2024.)

Objectives: Faecal occult blood testing (FOBT) and faecal immunochemical testing (FIT) are among the most used screening modalities for colorectal cancer (CRC). Colonoscopy is also widely used as a screening and diagnostic test for adults with a positive FOBT/FIT. Patient experience of colonoscopy is an important component for most CRC screening programmes. Individuals with negative experiences are less likely to engage with colonoscopy in the future and can deter others from attending colonoscopy when invited. This review synthesised data on patient experience with colonoscopy, following a positive result, to provide insights into how to improve patient experience within the English Bowel Cancer Screening Programme., Methods: MEDLINE, EMBASE and PsycINFO were searched for quantitative questionnaire studies evaluating patient-reported experience with colonoscopy, following a positive screening FOB/FIT result. The search was limited to studies published between 2000 and 2021 (ie, when the first FOBT/FIT screening programmes for CRC were introduced). Data-driven and narrative summary techniques were used to summarise the literature., Results: In total, six studies from the UK (n=4), Spain (n=1) and the Netherlands (n=1) were included in the review (total participants: 152 329; response rate: 68.0-79.3%). Patient experiences were categorised into three 'stages': 'pre-colonoscopy', 'during the test' and 'post-colonoscopy'. Overall, patients reported a positive experience in all six studies. Bowel preparation was the most frequently endorsed issue experienced pre-test (experienced by 10.0-41.0% of individuals, across all studies), pain and discomfort for during the test (experienced by 10.0-21.0% of participants) and abdominal pain and discomfort after the test (these were experienced by 14.8-22% of patients)., Conclusion: This review highlighted that patient-reported experiences associated with colonoscopy were generally positive. To improve the colonoscopy experience, bowel screening centres should investigate means to: make bowel preparation more acceptable, make colonoscopy less painful and reduce post-colonoscopy symptoms., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The potential of the electronic health record to support safety netting has been recognised and a number of electronic safety-netting (E-SN) tools developed., Aim: To establish the most important features of E-SN tools., Design & Setting: User-experience interviews followed by a Delphi study in a primary care setting in the UK., Method: The user-experience interviews were carried out remotely with primary care staff who had trialled the EMIS E-SN toolkit for suspected cancer. An electronic modified Delphi approach was used, with primary care staff involved in safety netting in any capacity, to measure consensus on tool features., Results: Thirteen user-experience interviews were carried out and features of E-SN tools seen as important formed the majority of the features included in the Delphi study. Three rounds of Delphi survey were administered. Sixteen responders (64%) completed all three rounds, and 28 out of 44 (64%) features reached consensus. Primary care staff preferred tools that were general in scope., Conclusion: Primary care staff indicated that tools that were not specific to cancer or any other disease, and had features that promoted their flexible, efficient, and integrated use, were important. However, when the important features were discussed with the patient and public involvement (PPI) group, they expressed disappointment that features they believed would make E-SN tools robust and provide a safety net that is difficult to fall through did not reach consensus. The successful adoption of E-SN tools will rely on an evidence base of their effectiveness. Efforts should be made to assess the impact of these tools on patient outcomes., (Copyright © 2023, The Authors.)

Objectives: Ovarian cancer symptoms are often non-specific and can be normalised before patients seek medical help. The Cancer Loyalty Card Study investigated self-management behaviours of patients with ovarian cancer prior to their diagnosis using loyalty card data collected by two UK-based high street retailers. Here, we discuss the feasibility outcomes for this novel research., Design: Observational case-control study., Setting: Control participants were invited to the study using social media and other sources from the general public. Once consented, control participants were required to submit proof of identification (ID) for their loyalty card data to be shared. Cases were identified using unique National Health Service (NHS) numbers (a proxy for ID) and were recruited through 12 NHS tertiary care clinics., Participants: Women in the UK, 18 years or older, with at least one of the participating high street retailers' loyalty cards. Those with an ovarian cancer diagnosis within 2 years of recruitment were considered cases, and those without an ovarian cancer diagnosis were considered controls., Primary Outcome Measures: Recruitment rates, demographics of participants and identification of any barriers to recruitment., Results: In total, 182 cases and 427 controls were recruited with significant differences by age, number of people in participants' households and the geographical region in the UK. However, only 37% (n=160/427) of control participants provided sufficient ID details and 81% (n=130/160) matched retailers' records. The majority of the participants provided complete responses to the 24-Item Ovarian Risk Questionnaire., Conclusions: Our findings show that recruitment to a study aiming to understand self-care behaviours using loyalty card data is challenging but feasible. The general public were willing to share their data for health research. Barriers in data sharing mechanisms need to be addressed to maximise participant retention., Trial Registration Number: ISRCTN14897082, CPMS 43323, NCT03994653., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Background: Health research using commercial data is increasing. The evidence on public acceptability and sociodemographic characteristics of individuals willing to share commercial data for health research is scarce., Objective: This survey study investigates the willingness to share commercial data for health research in the United Kingdom with 3 different organizations (government, private, and academic institutions), 5 different data types (internet, shopping, wearable devices, smartphones, and social media), and 10 different invitation methods to recruit participants for research studies with a focus on sociodemographic characteristics and psychological predictors., Methods: We conducted a web-based survey using quota sampling based on age distribution in the United Kingdom in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics, and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks, and perceived benefits of data sharing. The results are shown as percentages, adjusted odds ratios, and 95% CIs., Results: Overall, 61.1% (937/1534) of participants were willing to share their data with the government and 61% (936/1534) of participants were willing to share their data with academic research institutions compared with 43.1% (661/1534) who were willing to share their data with private organizations. The willingness to share varied between specific types of data-51.8% (794/1534) for loyalty cards, 35.2% (540/1534) for internet search history, 32% (491/1534) for smartphone data, 31.8% (488/1534) for wearable device data, and 30.4% (467/1534) for social media data. Increasing age was consistently and negatively associated with all the outcomes. Trust was positively associated with willingness to share commercial data, whereas worry about data misuse and the perceived importance of privacy were negatively associated with willingness to share commercial data. The perceived risk of sharing data was positively associated with willingness to share when the participants considered all the specific data types but not with the organizations. The participants favored postal research invitations over digital research invitations., Conclusions: This UK-based survey study shows that willingness to share commercial data for health research varies; however, researchers should focus on effectively communicating their data practices to minimize concerns about data misuse and improve public trust in data science. The results of this study can be further used as a guide to consider methods to improve recruitment strategies in health-related research and to improve response rates and participant retention., (©Yasemin Hirst, Sandro T Stoffel, Hannah R Brewer, Lada Timotijevic, Monique M Raats, James M Flanagan. Originally published in JMIR Public Health and Surveillance (https://publichealth.jmir.org), 23.03.2023.)

Introduction: Ovarian cancer is the eighth most common cancer in women worldwide, and about 1 in 5 women with ovarian cancer do not receive treatment, because they are too unwell by the time they are diagnosed. Symptoms of ovarian cancer are non-specific or can be associated with other common conditions, and women experiencing these symptoms have been shown to self-manage them using over-the-counter medication. Results from a recent proof-of-concept study suggest there may be an increase in the purchases of painkillers and indigestion medication 10-12 months before ovarian cancer diagnosis. We propose a case-control study, as part of a larger project called the Cancer Loyalty Card Study (CLOCS), to investigate whether a significant change in medication purchases could be an indication for early signs of ovarian cancer, using data already collected through store loyalty cards., Methods and Analysis: Using a retrospective case-control design, we aim to recruit 500 women diagnosed with ovarian cancer (cases) and 500 women without ovarian cancer (controls) in the UK who hold a loyalty card with at least one participating high street retailer. We will use pre-existing loyalty card data to compare past purchase patterns of cases with those of controls. In order to assess ovarian cancer risk in participants and their purchase patterns, we will collect information from participants on ovarian cancer risk factors and clinical data including symptoms experienced before diagnosis from recruited women with ovarian cancer., Ethics and Dissemination: CLOCS was reviewed and approved by the North West-Greater Manchester South Research Ethics Committee (19/NW/0427). Study outcomes will be disseminated through academic publications, the study website, social media and a report to the research sites that support the study once results are published., Trial Registration Number: ISRCTN 14897082, CPMS 43323, NCT03994653., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Background: Longer patient intervals can lead to more late-stage cancer diagnoses and higher mortality rates. Individuals may delay presenting to primary care with red flag symptoms and instead turn to the internet to seek information, purchase over-the-counter medication, and change their diet or exercise habits. With advancements in machine learning, there is the potential to explore this complex relationship between a patient's symptom appraisal and their first consultation at primary care through linkage of existing datasets (eg, health, commercial, and online)., Objective: Here, we aimed to explore feasibility and acceptability of symptom appraisal using commercial- and health-data linkages for cancer symptom surveillance., Methods: A proof-of-concept study was developed to assess the general public's acceptability of commercial- and health-data linkages for cancer symptom surveillance using a qualitative focus group study. We also investigated self-care behaviors of ovarian cancer patients using high-street retailer data, pre- and postdiagnosis., Results: Using a high-street retailer's data, 1118 purchases-from April 2013 to July 2017-by 11 ovarian cancer patients and one healthy individual were analyzed. There was a unique presence of purchases for pain and indigestion medication prior to cancer diagnosis, which could signal disease in a larger sample. Qualitative findings suggest that the public are willing to consent to commercial- and health-data linkages as long as their data are safeguarded and users of this data are transparent about their purposes., Conclusions: Cancer symptom surveillance using commercial data is feasible and was found to be acceptable. To test efficacy of cancer surveillance using commercial data, larger studies are needed with links to individual electronic health records., (©James M Flanagan, Hanna Skrobanski, Xin Shi, Yasemin Hirst. Originally published in JMIR Cancer (http://cancer.jmir.org), 17.01.2019.)

Background: There is increasing interest in using a quantitative faecal immunochemical test (FIT) to rule out colorectal cancer (CRC) in patients with high-risk symptoms in primary care., Aim: This study aimed to investigate GPs' attitudes and willingness to use a FIT over an urgent 2-week wait (2WW) referral., Design and Setting: A cross-sectional online survey involving 1024 GPs working across England., Method: Logistic regression models were used to explore the likelihood of GPs using a FIT instead of a 2WW referral, and reported using odds ratios (ORs) and 95% confidence intervals (95% CIs)., Results: Just over one-third of GPs ( n = 365) preferred to use a FIT as a rule-out test over a 2WW referral. GPs were more willing if they were: aged 36-45 years (OR 1.59 [95% CI = 1.04 to 2.44]); 46-55 years (OR 1.99 [95% CI = 1.14 to 3.47]); thought a FIT was highly accurate (OR 1.63 [95% CI = 1.16 to 2.29]); thought patients would benefit compared with having a colonoscopy (OR 2.02 [95% CI = 1.46 to 2.79]); and were highly confident about discussing the benefits of a FIT (OR 2.14 [95% CI = 1.46 to 3.16]). GPs were less willing if they had had >10 urgent referrals in the past year (OR 0.62 [95% CI = 0.40 to 0.94]) and thought that longer consultations would be needed (OR 0.61 [95% CI = 0.44 to 0.83])., Conclusion: The study findings suggest that the acceptability of using a FIT as a rule-out test in primary care is currently low, with less than half of GPs who perceived the test to be accurate preferring it over colonoscopy. Any potential guideline changes recommending a FIT in patients with high-risk symptoms, instead of urgent referral to rule out CRC, are likely to require intensive supporting educational outreach to increase GP confidence in the accuracy and application of a FIT in this context., (© British Journal of General Practice 2018.)

Introduction: Flexible sigmoidoscopy (FS) screening is associated with reduced colorectal cancer incidence and mortality when offered as a one-off test to men and women aged 55-64. The test, also referred to as the 'bowel scope screening' (BSS) test, was added to England's national Bowel Cancer Screening Programme in March 2013, where it is offered to men and women aged 55. Since its implementation, uptake of the BSS test has been low, with only 43% of the eligible population attending an appointment. Sending non-participants a reminder at age 56 has been shown to improve uptake by up to nine percentage points at a single centre in London; we hypothesise that adding a general practitioners (GPs) endorsement to the reminder could improve uptake even further., Methods and Analysis: This paper describes the protocol for a randomised controlled trial which will examine the effectiveness of adding a GPs endorsement to a reminder for BSS non-participants aged 56. All screening-eligible adults who have not responded to a BSS appointment at London North West Healthcare NHS Trust within 12 months of their initial invitation will be randomised to receive either a GP-endorsed reminder letter or reminder letter without GP endorsement. The primary outcome will be the proportion of individuals screened within each group 8 weeks after the reminder. Statistical comparisons will be made using univariate and multivariate logistic regression, with 'uptake' as the outcome variable, GP reminder group as the exposure and sociodemographic variables as covariates., Ethics and Dissemination: The study was approved by the Yorkshire & Humber-Bradford Leeds Research Ethics Committee (16/YH/0298) and the Confidentiality Advisory Group (17/CAG/0162). The results will be disseminated in a peer-reviewed journal in accordance with the Consort statement and will be made available to the public., Trial Registration Number: ISRCTN82867861., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)