# Fragmented care and guideline gaps

Source: https://onco.cc/bottlenecks/b-care-fragmentation/  
OnCo record `b-care-fragmentation` (Bottleneck). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Bottleneck
- Last checked: 2026-09-08
- Stage: access-delivery
- Severity: major
- Metrics: Increase in mortality per four-week delay in cancer treatment (surgery, systemic, radiotherapy) across seven cancers: 6% to 13% per 4 weeks (Hanna et al., BMJ 2020); Patients with metastatic non-squamous NSCLC in a US community network tested for all five guideline-recommended biomarkers before first-line therapy (2018-2020): Under half (Robert et al., Lung Cancer 2022); NHS England standard for time from urgent referral to first treatment: 62 days (target 85% of patients) (NHS England 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.

## Sources

- Hanna et al., Mortality due to cancer treatment delay: systematic review and meta-analysis (BMJ 2020): https://doi.org/10.1136/bmj.m4087
- NHS England Cancer Waiting Times statistics: https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/
- ASCO Quality Oncology Practice Initiative (archived copy): https://web.archive.org/web/20231029084627/https://practice.asco.org/quality-improvement/quality-programs/quality-oncology-practice-initiative

## Connected records

- collections: [ESMO Clinical Practice Guidelines & MCBS](https://onco.cc/collections/esmo-guidelines/), [International Guideline Harmonization Group for late effects of childhood cancer](https://onco.cc/collections/ighg/), [NCCN Guidelines](https://onco.cc/collections/nccn/), [NCI-Designated Cancer Centers](https://onco.cc/collections/nci-cancer-centers/)
- ideas: [A cancer blood test for older people arriving at A&E with unexplained symptoms](https://onco.cc/ideas/idea-prev-emergency-department-cancer-test/), [A dedicated clinic for people whose blood test says the cancer is back](https://onco.cc/ideas/idea-bio2-mrd-clinic-service/), [A defined pathway for patients with both dementia and cancer](https://onco.cc/ideas/idea-acc-dementia-and-cancer-pathway/), [A dietitian in every gastrointestinal and head and neck tumour board](https://onco.cc/ideas/idea-nl-dietitian-in-every-mdt/), [A digital second-opinion network answering community oncologists within 72 hours](https://onco.cc/ideas/idea-data-72-hour-second-opinion-network/), [A fast-track pathway from suspicion to treatment for pancreatic cancer in the NHS, measured from first scan to first treatment](https://onco.cc/ideas/idea-pdac-uk-fast-track-diagnosis-to-treatment-pathway/), [A fixed share of trial-group funding for getting proven care to patients](https://onco.cc/ideas/idea-fund-implementation-quota/), [A legislated, publicly reported 28-day standard from urgent referral to diagnosis](https://onco.cc/ideas/idea-acc-28-day-diagnosis-standard/), [A machine-readable treatment summary handed to every patient and readable by any hospital](https://onco.cc/ideas/idea-acc-portable-treatment-summary/), [A national incidental gallbladder cancer pathway: histology for every gallbladder, referral within two weeks, re-resection by eight](https://onco.cc/ideas/idea-gbc-national-incidental-cancer-pathway/), [A neutral slot exchange so unused CAR-T manufacturing slots go to the next patient](https://onco.cc/ideas/idea-reg-manufacturing-slot-exchange/), [A paid patient navigator for every new cancer diagnosis, reimbursed as a service](https://onco.cc/ideas/idea-acc-funded-navigator-per-diagnosis/), [A patient-held cancer record that travels across providers and borders](https://onco.cc/ideas/idea-data-patient-held-cancer-record/), [A same-week expert second opinion for every rare cancer diagnosis](https://onco.cc/ideas/idea-bio2-rare-cancer-telepathology-network/), [A single 'cancer check at 60' appointment bundling all screening tests](https://onco.cc/ideas/idea-prev-bundled-cancer-check-at-60/), [A standard handoff with medication reconciliation at every cancer care transition](https://onco.cc/ideas/idea-acc-transition-handoff-medication-reconciliation/), [A UK audit of trial access and germline testing uptake in triple-negative breast cancer](https://onco.cc/ideas/idea-tnbc-uk-trial-access-and-germline-testing-audit/), [Acute oncology assessment units so sick cancer patients bypass the emergency department](https://onco.cc/ideas/idea-acc-acute-oncology-assessment-units/), [An asynchronous expert second opinion for every new advanced-cancer diagnosis](https://onco.cc/ideas/idea-acc-universal-asynchronous-second-opinion/), [Answer prior authorisation requests in seconds from the medical record](https://onco.cc/ideas/idea-cost-real-time-pa-fhir/), [Audit whether tumour board recommendations were actually carried out](https://onco.cc/ideas/idea-acc-tumour-board-implementation-audit/), [Automatic palliative care referral triggered by diagnosis, not by decline](https://onco.cc/ideas/idea-acc-automatic-early-palliative-triggers/), [Bring the oncologist to the local clinic by video and the drug to the local pharmacy](https://onco.cc/ideas/idea-cost-travel-teleoncology/), [Bundled episode payments for cancer care with bonuses for guideline concordance](https://onco.cc/ideas/idea-acc-episode-payment-tied-to-concordance/), [Cancer risk scores running automatically in GP records to prompt urgent referral](https://onco.cc/ideas/idea-prev-ehr-symptom-signature-prompts/), [Choose regimens by infusion-chair hours, not just efficacy, where chairs are the constraint](https://onco.cc/ideas/idea-acc-infusion-sparing-regimens/), [Close the gap between who gets triple-negative breast cancer and who is in its trials](https://onco.cc/ideas/idea-tnbc-disparities-in-access-and-outcomes/), [Cure hepatitis C in prisons and drug services, and enrol the cured in liver cancer surveillance](https://onco.cc/ideas/idea-prev-hcv-test-treat-surveillance-linkage/), [Decision aids built into the record for every preference-sensitive cancer choice](https://onco.cc/ideas/idea-acc-embedded-decision-aids/), [Default fertility preservation referral for every patient under 40 before treatment](https://onco.cc/ideas/idea-acc-default-fertility-preservation-referral/), [Ethnicity-stratified outcome reporting for triple-negative breast cancer in NHS cancer statistics](https://onco.cc/ideas/idea-tnbc-uk-ethnicity-stratified-outcome-reporting/), [Exempt oncologists who follow the pathway from prior authorisation](https://onco.cc/ideas/idea-cost-gold-card-oncology/), [Find peritoneal spread while it is still small, and run complete cytoreduction through networks rather than adding heated chemotherapy](https://onco.cc/ideas/idea-crc-peritoneal-disease-found-early-and-treated-in-networks/), [Formal shared-care agreements between oncology and family doctors, with same-day e-consult](https://onco.cc/ideas/idea-acc-primary-care-shared-care-agreements/), [Four weeks of training and nutrition before major cancer surgery, as standard](https://onco.cc/ideas/idea-bio2-prehabilitation-standard/), [Give subcutaneous immunotherapy in community clinics and at home](https://onco.cc/ideas/idea-cost-subcutaneous-community/), [Home administration of selected chemotherapy and immunotherapy for older and frail patients](https://onco.cc/ideas/idea-acc-home-chemotherapy-older-patients/), [Hospital-at-home for oncology: treating low-risk febrile neutropenia and dehydration at home](https://onco.cc/ideas/idea-acc-hospital-at-home-oncology/), [Live guideline-concordance dashboards for every tumour board, generated from the record](https://onco.cc/ideas/idea-acc-guideline-concordance-dashboards/), [Living, machine-readable guidelines pushed to the point of care in every country](https://onco.cc/ideas/idea-moon-living-machine-readable-guidelines/), [Make resistance a diagnosis: sequence at every progression and choose the next line from what the tumour became](https://onco.cc/ideas/idea-lung-resistance-directed-sequencing-at-every-progression/), [Make six-weekly immunotherapy the default schedule](https://onco.cc/ideas/idea-cost-extended-interval-default/), [Make the treatment exposure record machine-readable, so surveillance can be computed](https://onco.cc/ideas/idea-rejuv-exposure-record-a-machine-can-read/), [Mandatory national virtual tumour boards for rare and complex cancers](https://onco.cc/ideas/idea-acc-national-virtual-mdt-rare-complex/), [National hub-and-spoke cancer networks with defined referral tiers](https://onco.cc/ideas/idea-acc-hub-spoke-national-networks/), [Oncology hospital-at-home with remote monitoring for toxicity](https://onco.cc/ideas/idea-moon-oncology-hospital-at-home/), [Oncology pharmacists as protocol prescribers for supportive care and dose adjustments](https://onco.cc/ideas/idea-acc-oncology-pharmacist-prescribing/), [One-stop breast clinics: imaging, biopsy and a preliminary answer in a single visit](https://onco.cc/ideas/idea-acc-one-stop-breast-diagnostic-clinic/), [Pancreatic enzyme replacement by default: prescribe at diagnosis, audit the rate, and run the trial that settles survival](https://onco.cc/ideas/idea-pdac-enzyme-replacement-prescribing-by-default/), [Pathologists order genomic profiling automatically at diagnosis of advanced cancer](https://onco.cc/ideas/idea-acc-reflex-genomic-profiling-at-diagnosis/), [Patient navigation as a legal entitlement from the day of diagnosis](https://onco.cc/ideas/idea-moon-navigation-as-a-right/), [Pay the same for an infusion whether it is given in a hospital or a clinic](https://onco.cc/ideas/idea-cost-site-neutral-infusion/), [Protect the gut flora of patients about to start immunotherapy](https://onco.cc/ideas/idea-bio2-antibiotic-stewardship-io/), [Public country dashboards for the three WHO breast cancer targets](https://onco.cc/ideas/idea-acc-gbci-country-dashboards/), [Public risk-adjusted outcome reporting for cancer surgery to drive centralisation](https://onco.cc/ideas/idea-fund-surgical-outcomes-public-reporting/), [Publish each laboratory's biomarker proficiency results](https://onco.cc/ideas/idea-tr2-eqa-public-results/), [Publish the four numbers the NHS lung cancer pathway does not currently measure: reflex testing rate, genomic turnaround, surgical access and a lung-specific waiting time in every nation](https://onco.cc/ideas/idea-lung-uk-screening-testing-and-access-gaps/), [Raise the share of UK patients who receive any active treatment, and publish it by trust](https://onco.cc/ideas/idea-pdac-uk-active-treatment-rate-audit-and-target/), [Rapid diagnostic centres for people with vague but worrying symptoms](https://onco.cc/ideas/idea-acc-rapid-diagnostic-centres-vague-symptoms/), [Real-time guideline-concordance feedback for every cancer centre](https://onco.cc/ideas/idea-data-guideline-concordance-dashboards/), [Record and publish the symptom-to-diagnosis interval for every cancer, by hospital](https://onco.cc/ideas/idea-acc-diagnostic-interval-public-registry/), [Report death from other causes as an outcome of the prostate cancer service, split by deprivation and ethnicity](https://onco.cc/ideas/idea-prostate-other-cause-mortality-as-a-reported-service-outcome/), [Risk-stratified lifelong care for tens of millions of survivors, automated and shared with primary care](https://onco.cc/ideas/idea-moon-survivor-lifelong-care-model/), [Screen every patient for financial hardship at diagnosis and connect them to help](https://onco.cc/ideas/idea-acc-financial-toxicity-screening-at-diagnosis/), [Screen every patient for money trouble the way we screen for pain](https://onco.cc/ideas/idea-cost-financial-toxicity-screening/), [Simulate each hospital's cancer pathway as a queue to find and remove the waits](https://onco.cc/ideas/idea-acc-pathway-capacity-simulation/), [Standing reflex biomarker panels per tumour type, run without an oncologist's order](https://onco.cc/ideas/idea-acc-reflex-biomarker-panels-by-tumour/), [Surveillance for every germline carrier found by universal testing, inside a registry rather than a research exception](https://onco.cc/ideas/idea-pdac-surveillance-for-every-germline-carrier/), [Survivorship care plans generated automatically from the treatment record](https://onco.cc/ideas/idea-acc-auto-generated-survivorship-plans/), [Test every man for DNA repair faults on the day his prostate cancer is found to have spread, not three treatments later](https://onco.cc/ideas/idea-prostate-hrr-testing-at-metastatic-diagnosis/), [The drugs that cure lymphoma, and the places that do not have them](https://onco.cc/ideas/lymphoma-ev-the-drugs-that-cure-and-the-places-without-them/), [Treat the deprivation gradient in lung cancer as a defect in delivery that can be fixed and measured](https://onco.cc/ideas/idea-lung-deprivation-gradient-treated-as-a-defect-in-delivery/), [Treat wasting like sepsis: a trigger, a bundle, an audit](https://onco.cc/ideas/idea-bio2-cachexia-pathway-code/), [UK gap: match endoscopy capacity and quality to the faecal immunochemical test thresholds the NHS has already set](https://onco.cc/ideas/idea-crc-uk-colonoscopy-capacity-and-fit-threshold/), [UK gap: shorten the route to diagnosis for patients below the screening age, where the rise in incidence is](https://onco.cc/ideas/idea-crc-uk-young-patient-referral-and-diagnostic-interval/), [Weekly electronic symptom reporting as a standard of care during systemic therapy](https://onco.cc/ideas/idea-acc-electronic-pro-monitoring-standard/), [Write a rehabilitation prescription at the end of treatment, and fund it like a drug](https://onco.cc/ideas/idea-rejuv-rehabilitation-prescription-at-discharge/)
- cancers: [Colorectal cancer](https://onco.cc/cancers/colorectal/), [Head and neck squamous cell carcinoma](https://onco.cc/cancers/head-and-neck/), [Lung cancer (all types)](https://onco.cc/cancers/lung-cancer/), [Non-small-cell lung cancer](https://onco.cc/cancers/nsclc/), [Oesophageal cancer](https://onco.cc/cancers/esophageal/), [Pancreatic ductal adenocarcinoma](https://onco.cc/cancers/pancreatic/)
- technologies: [Adolescents and young adults: a group with its own cancers, its own gap and its own needs](https://onco.cc/technologies/rejuv-ayac-distinct-group/), [After treatment in the Nordic countries: rehabilitation written into the pathway](https://onco.cc/technologies/rejuv-access-survivorship-care-nordic/), [After treatment in the UK: personalised care, and follow-up you lead yourself](https://onco.cc/technologies/rejuv-access-survivorship-care-uk/), [After treatment in the United States: the survivorship care plan, and what the trial found](https://onco.cc/technologies/rejuv-access-survivorship-care-us/), [AI trial matching & clinical decision support](https://onco.cc/technologies/ai-trial-matching/), [Asking people how they are, every week, as a treatment in its own right](https://onco.cc/technologies/rejuv-measure-epro-as-treatment/), [Companion diagnostics](https://onco.cc/technologies/companion-diagnostic/), [Comprehensive genomic profiling](https://onco.cc/technologies/cgp/), [Enhanced recovery (ERAS) and perioperative nutrition](https://onco.cc/technologies/eras-perioperative-nutrition/), [Liquid biopsy (ctDNA)](https://onco.cc/technologies/liquid-biopsy/), [Long-term follow-up in the United Kingdom: what a survivor is actually offered](https://onco.cc/technologies/rejuv-paed-uk-long-term-follow-up/), [Referral to rehabilitation: the service most people who need it never see](https://onco.cc/technologies/rejuv-access-rehabilitation-referral/), [Services built for teenagers and young adults, and what the national evaluation found](https://onco.cc/technologies/rejuv-ayac-services/), [Smoking cessation in cancer patients](https://onco.cc/technologies/smoking-cessation-after-diagnosis/), [The Children's Oncology Group Long-Term Follow-Up Guidelines](https://onco.cc/technologies/rejuv-paed-cog-ltfu-guidelines/), [The handover from children's to adult services, where follow-up falls away](https://onco.cc/technologies/rejuv-paed-transition-to-adult-care/), [What has actually been implemented since those trials, and what has not](https://onco.cc/technologies/rejuv-measure-epro-implementation/), [Who gets told about fertility before treatment, and who does not](https://onco.cc/technologies/rejuv-access-fertility-preservation/), [Who misses out on recovery care, measured](https://onco.cc/technologies/rejuv-access-who-misses-out/)
- companies: [Foundation Medicine (Roche)](https://onco.cc/companies/foundation-medicine/), [Guardant Health](https://onco.cc/companies/guardant-health/), [Tempus AI](https://onco.cc/companies/tempus/)
- institutions: [American Society of Clinical Oncology (ASCO)](https://onco.cc/institutions/asco/), [City of Hope Orange County](https://onco.cc/institutions/city-of-hope-orange-county/), [Dartmouth Cancer Center](https://onco.cc/institutions/dartmouth-cancer-center/), [Deutsche Krebsgesellschaft](https://onco.cc/institutions/deutsche-krebsgesellschaft/), [Deutsche Krebshilfe](https://onco.cc/institutions/deutsche-krebshilfe/), [Deutsches Netzwerk für Personalisierte Medizin](https://onco.cc/institutions/dnpm/), [European Cancer Organisation](https://onco.cc/institutions/ecco/), [European Society for Medical Oncology (ESMO)](https://onco.cc/institutions/esmo/), [European Society of Surgical Oncology](https://onco.cc/institutions/esso/), [Homi Bhabha Cancer Hospital and Mahamana Pandit Madan Mohan Malaviya Cancer Centre, Varanasi](https://onco.cc/institutions/homi-bhabha-cancer-hospital-varanasi/), [Intermountain Health Cancer Center](https://onco.cc/institutions/intermountain-cancer/), [Markey Cancer Center, University of Kentucky](https://onco.cc/institutions/kentucky-markey/), [National Cancer Grid of India](https://onco.cc/institutions/national-cancer-grid/), [National Comprehensive Cancer Network (NCCN)](https://onco.cc/institutions/nccn-org/), [Northwell Health Cancer Institute](https://onco.cc/institutions/northwell-cancer-institute/), [Organisation of European Cancer Institutes](https://onco.cc/institutions/oeci/), [Tata Trusts](https://onco.cc/institutions/tata-trusts/), [Teenage Cancer Trust](https://onco.cc/institutions/teenage-cancer-trust/), [The Christie NHS Foundation Trust](https://onco.cc/institutions/the-christie/), [The new AIIMS network (PMSSY)](https://onco.cc/institutions/aiims-network/), [The Royal Marsden](https://onco.cc/institutions/royal-marsden/), [VCU Massey Comprehensive Cancer Center](https://onco.cc/institutions/vcu-massey/), [Velindre Cancer Centre](https://onco.cc/institutions/velindre-cardiff/)
- terms: [Bowel cancer after abdominal and pelvic radiotherapy](https://onco.cc/terms/second-primary-bowel-after-abdominal-radiotherapy/), [Breast cancer after chest radiotherapy given young](https://onco.cc/terms/second-primary-breast-after-chest-radiotherapy/), [Companion diagnostic](https://onco.cc/terms/companion-diagnostic-term/), [Lines of therapy](https://onco.cc/terms/first-line/), [Malnutrition screening tools (MUST, NRS-2002, MST, PG-SGA)](https://onco.cc/terms/malnutrition-screening/), [Neoadjuvant / adjuvant / perioperative](https://onco.cc/terms/neoadjuvant-adjuvant/), [Screening survivors: where the UK, American and European answers differ](https://onco.cc/terms/rejuv-second-screening-after-treatment-compared/), [Standard of care](https://onco.cc/terms/standard-of-care/), [State biomarker testing coverage laws](https://onco.cc/terms/state-biomarker-testing-laws/), [The UK very high risk breast screening protocol after chest radiotherapy](https://onco.cc/terms/rejuv-second-uk-very-high-risk-breast-screening/)
- key papers: [ASCO 2021 guideline: how to recognise and manage the immune-related side effects of checkpoint inhibitors](https://onco.cc/key-papers/paper-asco-irae-guideline-jco-2021/), [Association of Black race with prostate cancer-specific and other-cause mortality](https://onco.cc/key-papers/paper-dess-black-race-prostate-mortality-jama-oncol-2019/), [Basch: asking patients to report symptoms online during chemotherapy improved survival](https://onco.cc/key-papers/paper-basch-epro-survival-jama-2017/), [DeLLphi-301: tarlatamab, a DLL3-targeting T-cell engager, in previously treated small-cell lung cancer](https://onco.cc/key-papers/paper-dellphi-301-nejm-2023/), [Enzyme replacement improves survival among patients with pancreatic cancer: Results of a population based study](https://onco.cc/key-papers/paper-roberts-pert-survival-pancreatic-cancer-pancreatology-2019/), [Ethnicity and outcome of young breast cancer patients in the United Kingdom: the POSH study](https://onco.cc/key-papers/paper-copson-posh-ethnicity-young-breast-cancer-uk-bjc-2014/), [Evaluation of USPSTF Lung Cancer Screening Guidelines Among African American Adult Smokers](https://onco.cc/key-papers/paper-aldrich-uspstf-screening-african-american-smokers-jama-oncol-2019/), [Inherited DNA-repair gene mutations in men with metastatic prostate cancer](https://onco.cc/key-papers/paper-pritchard-inherited-dna-repair-metastatic-prostate-nejm-2016/), [Mortality due to cancer treatment delay: systematic review and meta-analysis](https://onco.cc/key-papers/paper-hanna-bmj/), [Quality indicators for colonoscopy and the risk of interval cancer](https://onco.cc/key-papers/paper-kaminski-adenoma-detection-rate-interval-cancer-nejm-2010/), [Randomized trial of cytoreduction and hyperthermic intraperitoneal chemotherapy versus systemic chemotherapy and palliative surgery in patients with peritoneal carcinomatosis of colorectal cancer](https://onco.cc/key-papers/paper-verwaal-cytoreduction-hipec-peritoneal-colorectal-jco-2003/), [Re-resection in Incidental Gallbladder Cancer: Survival and the Incidence of Residual Disease](https://onco.cc/key-papers/paper-de-savornin-lohman-re-resection-incidental-gallbladder-cancer-aso-2020/), [Socioeconomic inequalities in lung cancer treatment: systematic review and meta-analysis](https://onco.cc/key-papers/paper-forrest-socioeconomic-inequalities-lung-cancer-treatment-plos-med-2013/), [Unger: most patients never get the chance to join a cancer trial, and when offered, half say yes](https://onco.cc/key-papers/paper-unger-trial-participation-barriers-jnci-2019/)
- roadmaps: [Colorectal cancer roadmap: from the adenoma-carcinoma sequence and the first screening trials to total mesorectal excision, oxaliplatin, RAS testing, immunotherapy for mismatch repair-deficient disease, ctDNA-guided treatment and organ preservation](https://onco.cc/roadmaps/colorectal-roadmap/), [Gallbladder cancer roadmap: from a chance finding at gallstone surgery to a disease with its own trials](https://onco.cc/roadmaps/gallbladder-cancer-roadmap/), [Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question](https://onco.cc/roadmaps/pancreatic-roadmap/)
- people: [Ratan Tata](https://onco.cc/people/ratan-tata/)
- trials: [PREHAB: multimodal prehabilitation before colorectal cancer surgery](https://onco.cc/trials/prehab-trial/)

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