{"entity":{"id":"b-care-fragmentation","kind":"bottleneck","name":"Fragmented care and guideline gaps","aka":[],"tldr":"Patients fall between specialists, wait for referrals and often do not get the treatment guidelines say they should.","summary":"The distance between what guidelines recommend and what patients receive is one of the largest and least glamorous sources of avoidable death. Every four-week delay from diagnosis to treatment increases mortality by roughly 6-13% across common cancers, and delays accumulate at each hand-off between primary care, imaging, biopsy, pathology, molecular testing, multidisciplinary review and treatment. Genomic testing that determines eligibility for targeted therapy is incomplete in a large share of eligible lung cancer patients, and results arrive after first-line treatment has begun. Variation between hospitals in surgical quality, radiotherapy technique and systemic therapy use exceeds the effect size of most new drugs. The causes are organisational: no single owner of the patient pathway, information that does not travel with the patient, capacity constraints, and payment systems that reward activity rather than timeliness or adherence.","asOf":"2026-09-08","links":[{"label":"Hanna et al., Mortality due to cancer treatment delay: systematic review and meta-analysis (BMJ 2020)","url":"https://doi.org/10.1136/bmj.m4087"},{"label":"NHS England Cancer Waiting Times statistics","url":"https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/"},{"label":"ASCO Quality Oncology Practice Initiative (archived copy)","url":"https://web.archive.org/web/20231029084627/https://practice.asco.org/quality-improvement/quality-programs/quality-oncology-practice-initiative"}],"tags":[],"related":["nccn","esmo-guidelines","nci-cancer-centers","idea-acc-one-stop-breast-diagnostic-clinic","idea-acc-28-day-diagnosis-standard","idea-acc-national-virtual-mdt-rare-complex","idea-acc-primary-care-shared-care-agreements","idea-acc-tumour-board-implementation-audit","idea-acc-diagnostic-interval-public-registry","idea-acc-reflex-biomarker-panels-by-tumour","idea-acc-rapid-diagnostic-centres-vague-symptoms","idea-acc-embedded-decision-aids","idea-acc-financial-toxicity-screening-at-diagnosis","idea-acc-universal-asynchronous-second-opinion","idea-acc-episode-payment-tied-to-concordance","idea-acc-transition-handoff-medication-reconciliation","idea-acc-pathway-capacity-simulation","idea-cost-subcutaneous-community","idea-cost-gold-card-oncology","idea-cost-real-time-pa-fhir","idea-cost-travel-teleoncology"],"cancers":["nsclc","colorectal","pancreatic","head-and-neck","esophageal"],"sections":[],"technologies":["cgp","liquid-biopsy","companion-diagnostic","ai-trial-matching"],"targets":[],"drugs":[],"companies":["foundation-medicine","guardant-health","tempus"],"institutions":["asco","esmo","nccn-org","the-christie","royal-marsden"],"pathways":[],"terms":["standard-of-care","first-line","neoadjuvant-adjuvant","companion-diagnostic-term"],"trials":[],"people":[],"bottlenecks":[],"keyPapers":["paper-hanna-bmj"],"journals":[],"dependsOn":[],"notes":[],"stage":"access-delivery","severity":"major","metrics":[{"label":"Increase in mortality per four-week delay in cancer treatment (surgery, systemic, radiotherapy) across seven cancers","value":"6% to 13% per 4 weeks","source":"Hanna et al., BMJ 2020","url":"https://doi.org/10.1136/bmj.m4087"},{"label":"Patients with metastatic non-squamous NSCLC in a US community network tested for all five guideline-recommended biomarkers before first-line therapy (2018-2020)","value":"Under half","source":"Robert et al., Lung Cancer 2022","url":"https://doi.org/10.1016/j.lungcan.2022.01.021"},{"label":"NHS England standard for time from urgent referral to first treatment","value":"62 days (target 85% of patients)","source":"NHS England Cancer Waiting Times","url":"https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/"}],"causes":["No single clinician or team owns the pathway from symptom to treatment.","Records, images and test results do not follow the patient between organisations.","Diagnostic capacity (imaging, endoscopy, pathology) is the rate-limiting step in most systems.","Molecular testing is ordered sequentially and late rather than reflexively at diagnosis.","Payment rewards volume of procedures rather than adherence to guidelines or speed.","Guidelines are long, frequently updated and not embedded in the tools clinicians use."],"currentEfforts":["NHS Rapid Diagnostic Centres and the Faster Diagnosis Standard target 28 days from referral to diagnosis or exclusion of cancer.","The NHS Genomic Medicine Service provides a national test directory and reflex testing for cancer, and ESMO and NCCN maintain guidelines with explicit biomarker testing recommendations.","ASCO's Quality Oncology Practice Initiative (QOPI) certifies practices against guideline-concordance measures.","Mandatory multidisciplinary tumour boards in the UK, EU cancer centres and NCI-designated centres reduce variation in treatment decisions.","Patient navigation programmes, now reimbursable under US Medicare (2024), assign a person to guide patients through the pathway.","Comprehensive genomic profiling and liquid biopsy at diagnosis (Foundation Medicine, Guardant, Tempus) shorten the time to actionable results."],"successLooksLike":"Median time from suspicion to first treatment is under six weeks in every high-income system, more than 90% of eligible patients have complete biomarker results before first-line therapy, and guideline-concordant treatment rates exceed 90% with little inter-hospital variation."},"route":"/bottlenecks/b-care-fragmentation/","neighbours":{"collection":[{"id":"esmo-guidelines","kind":"collection","name":"ESMO Clinical Practice Guidelines & MCBS","route":"/collections/esmo-guidelines/"},{"id":"ighg","kind":"collection","name":"International Guideline Harmonization Group for late effects of childhood cancer","route":"/collections/ighg/"},{"id":"nccn","kind":"collection","name":"NCCN Guidelines","route":"/collections/nccn/"},{"id":"nci-cancer-centers","kind":"collection","name":"NCI-Designated Cancer Centers","route":"/collections/nci-cancer-centers/"}],"idea":[{"id":"idea-prev-emergency-department-cancer-test","kind":"idea","name":"A cancer blood test for older people arriving at A&E with unexplained symptoms","route":"/ideas/idea-prev-emergency-department-cancer-test/"},{"id":"idea-bio2-mrd-clinic-service","kind":"idea","name":"A dedicated clinic for people whose blood test says the cancer is back","route":"/ideas/idea-bio2-mrd-clinic-service/"},{"id":"idea-acc-dementia-and-cancer-pathway","kind":"idea","name":"A defined pathway for patients with both dementia and cancer","route":"/ideas/idea-acc-dementia-and-cancer-pathway/"},{"id":"idea-nl-dietitian-in-every-mdt","kind":"idea","name":"A dietitian in every gastrointestinal and head and neck tumour board","route":"/ideas/idea-nl-dietitian-in-every-mdt/"},{"id":"idea-data-72-hour-second-opinion-network","kind":"idea","name":"A digital second-opinion network answering community oncologists within 72 hours","route":"/ideas/idea-data-72-hour-second-opinion-network/"},{"id":"idea-pdac-uk-fast-track-diagnosis-to-treatment-pathway","kind":"idea","name":"A fast-track pathway from suspicion to treatment for pancreatic cancer in the NHS, measured from first scan to first treatment","route":"/ideas/idea-pdac-uk-fast-track-diagnosis-to-treatment-pathway/"},{"id":"idea-fund-implementation-quota","kind":"idea","name":"A fixed share of trial-group funding for getting proven care to patients","route":"/ideas/idea-fund-implementation-quota/"},{"id":"idea-acc-28-day-diagnosis-standard","kind":"idea","name":"A legislated, publicly reported 28-day standard from urgent referral to diagnosis","route":"/ideas/idea-acc-28-day-diagnosis-standard/"},{"id":"idea-acc-portable-treatment-summary","kind":"idea","name":"A machine-readable treatment summary handed to every patient and readable by any hospital","route":"/ideas/idea-acc-portable-treatment-summary/"},{"id":"idea-gbc-national-incidental-cancer-pathway","kind":"idea","name":"A national incidental gallbladder cancer pathway: histology for every gallbladder, referral within two weeks, re-resection by eight","route":"/ideas/idea-gbc-national-incidental-cancer-pathway/"},{"id":"idea-reg-manufacturing-slot-exchange","kind":"idea","name":"A neutral slot exchange so unused CAR-T manufacturing slots go to the next patient","route":"/ideas/idea-reg-manufacturing-slot-exchange/"},{"id":"idea-acc-funded-navigator-per-diagnosis","kind":"idea","name":"A paid patient navigator for every new cancer diagnosis, reimbursed as a service","route":"/ideas/idea-acc-funded-navigator-per-diagnosis/"},{"id":"idea-data-patient-held-cancer-record","kind":"idea","name":"A patient-held cancer record that travels across providers and borders","route":"/ideas/idea-data-patient-held-cancer-record/"},{"id":"idea-bio2-rare-cancer-telepathology-network","kind":"idea","name":"A same-week expert second opinion for every rare cancer diagnosis","route":"/ideas/idea-bio2-rare-cancer-telepathology-network/"},{"id":"idea-prev-bundled-cancer-check-at-60","kind":"idea","name":"A single 'cancer check at 60' appointment bundling all screening tests","route":"/ideas/idea-prev-bundled-cancer-check-at-60/"},{"id":"idea-acc-transition-handoff-medication-reconciliation","kind":"idea","name":"A standard handoff with medication reconciliation at every cancer care transition","route":"/ideas/idea-acc-transition-handoff-medication-reconciliation/"},{"id":"idea-tnbc-uk-trial-access-and-germline-testing-audit","kind":"idea","name":"A UK audit of trial access and germline testing uptake in triple-negative breast cancer","route":"/ideas/idea-tnbc-uk-trial-access-and-germline-testing-audit/"},{"id":"idea-acc-acute-oncology-assessment-units","kind":"idea","name":"Acute oncology assessment units so sick cancer patients bypass the emergency department","route":"/ideas/idea-acc-acute-oncology-assessment-units/"},{"id":"idea-acc-universal-asynchronous-second-opinion","kind":"idea","name":"An asynchronous expert second opinion for every new advanced-cancer diagnosis","route":"/ideas/idea-acc-universal-asynchronous-second-opinion/"},{"id":"idea-cost-real-time-pa-fhir","kind":"idea","name":"Answer prior authorisation requests in seconds from the medical record","route":"/ideas/idea-cost-real-time-pa-fhir/"},{"id":"idea-acc-tumour-board-implementation-audit","kind":"idea","name":"Audit whether tumour board recommendations were actually carried out","route":"/ideas/idea-acc-tumour-board-implementation-audit/"},{"id":"idea-acc-automatic-early-palliative-triggers","kind":"idea","name":"Automatic palliative care referral triggered by diagnosis, not by decline","route":"/ideas/idea-acc-automatic-early-palliative-triggers/"},{"id":"idea-cost-travel-teleoncology","kind":"idea","name":"Bring the oncologist to the local clinic by video and the drug to the local pharmacy","route":"/ideas/idea-cost-travel-teleoncology/"},{"id":"idea-acc-episode-payment-tied-to-concordance","kind":"idea","name":"Bundled episode payments for cancer care with bonuses for guideline concordance","route":"/ideas/idea-acc-episode-payment-tied-to-concordance/"},{"id":"idea-prev-ehr-symptom-signature-prompts","kind":"idea","name":"Cancer risk scores running automatically in GP records to prompt urgent referral","route":"/ideas/idea-prev-ehr-symptom-signature-prompts/"},{"id":"idea-acc-infusion-sparing-regimens","kind":"idea","name":"Choose regimens by infusion-chair hours, not just efficacy, where chairs are the constraint","route":"/ideas/idea-acc-infusion-sparing-regimens/"},{"id":"idea-tnbc-disparities-in-access-and-outcomes","kind":"idea","name":"Close the gap between who gets triple-negative breast cancer and who is in its trials","route":"/ideas/idea-tnbc-disparities-in-access-and-outcomes/"},{"id":"idea-prev-hcv-test-treat-surveillance-linkage","kind":"idea","name":"Cure hepatitis C in prisons and drug services, and enrol the cured in liver cancer surveillance","route":"/ideas/idea-prev-hcv-test-treat-surveillance-linkage/"},{"id":"idea-acc-embedded-decision-aids","kind":"idea","name":"Decision aids built into the record for every preference-sensitive cancer choice","route":"/ideas/idea-acc-embedded-decision-aids/"},{"id":"idea-acc-default-fertility-preservation-referral","kind":"idea","name":"Default fertility preservation referral for every patient under 40 before treatment","route":"/ideas/idea-acc-default-fertility-preservation-referral/"},{"id":"idea-tnbc-uk-ethnicity-stratified-outcome-reporting","kind":"idea","name":"Ethnicity-stratified outcome reporting for triple-negative breast cancer in NHS cancer statistics","route":"/ideas/idea-tnbc-uk-ethnicity-stratified-outcome-reporting/"},{"id":"idea-cost-gold-card-oncology","kind":"idea","name":"Exempt oncologists who follow the pathway from prior authorisation","route":"/ideas/idea-cost-gold-card-oncology/"},{"id":"idea-crc-peritoneal-disease-found-early-and-treated-in-networks","kind":"idea","name":"Find peritoneal spread while it is still small, and run complete cytoreduction through networks rather than adding heated chemotherapy","route":"/ideas/idea-crc-peritoneal-disease-found-early-and-treated-in-networks/"},{"id":"idea-acc-primary-care-shared-care-agreements","kind":"idea","name":"Formal shared-care agreements between oncology and family doctors, with same-day e-consult","route":"/ideas/idea-acc-primary-care-shared-care-agreements/"},{"id":"idea-bio2-prehabilitation-standard","kind":"idea","name":"Four weeks of training and nutrition before major cancer surgery, as standard","route":"/ideas/idea-bio2-prehabilitation-standard/"},{"id":"idea-cost-subcutaneous-community","kind":"idea","name":"Give subcutaneous immunotherapy in community clinics and at home","route":"/ideas/idea-cost-subcutaneous-community/"},{"id":"idea-acc-home-chemotherapy-older-patients","kind":"idea","name":"Home administration of selected chemotherapy and immunotherapy for older and frail patients","route":"/ideas/idea-acc-home-chemotherapy-older-patients/"},{"id":"idea-acc-hospital-at-home-oncology","kind":"idea","name":"Hospital-at-home for oncology: treating low-risk febrile neutropenia and dehydration at home","route":"/ideas/idea-acc-hospital-at-home-oncology/"},{"id":"idea-acc-guideline-concordance-dashboards","kind":"idea","name":"Live guideline-concordance 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computed","route":"/ideas/idea-rejuv-exposure-record-a-machine-can-read/"},{"id":"idea-acc-national-virtual-mdt-rare-complex","kind":"idea","name":"Mandatory national virtual tumour boards for rare and complex cancers","route":"/ideas/idea-acc-national-virtual-mdt-rare-complex/"},{"id":"idea-acc-hub-spoke-national-networks","kind":"idea","name":"National hub-and-spoke cancer networks with defined referral tiers","route":"/ideas/idea-acc-hub-spoke-national-networks/"},{"id":"idea-moon-oncology-hospital-at-home","kind":"idea","name":"Oncology hospital-at-home with remote monitoring for toxicity","route":"/ideas/idea-moon-oncology-hospital-at-home/"},{"id":"idea-acc-oncology-pharmacist-prescribing","kind":"idea","name":"Oncology pharmacists as protocol prescribers for supportive care and dose adjustments","route":"/ideas/idea-acc-oncology-pharmacist-prescribing/"},{"id":"idea-acc-one-stop-breast-diagnostic-clinic","kind":"idea","name":"One-stop breast clinics: imaging, biopsy and a 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