{"entity":{"id":"b-patient-voice","kind":"bottleneck","name":"Patients lack understanding, navigation and agency","aka":[],"tldr":"Most patients cannot understand their options, find trials, or push back, so decisions are made for them.","summary":"A cancer diagnosis drops people into a system of jargon, probabilities, time-pressed consultations and fragmented hand-offs at the moment they are least able to process it. More than a third of US adults have basic or below-basic health literacy, so consent forms, trial descriptions and even standard patient leaflets are beyond many patients; navigating referrals, insurance and appointments falls on them and their families; and the systematic collection of what patients themselves report about symptoms, which in a randomised trial improved survival, is still not routine. Patients rarely know that a trial exists for them, cannot evaluate conflicting advice, and often do not feel entitled to ask for a second opinion or decline a recommendation. Navigation services, plain-language guidelines, patient-reported outcome monitoring, shared decision aids and patient-controlled data are all evidence-based and all unevenly delivered.","asOf":"2026-09-08","links":[{"label":"Basch et al., Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment (JAMA 2017)","url":"https://doi.org/10.1001/jama.2017.7156"},{"label":"NCCN Guidelines for Patients","url":"https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients"},{"label":"NCI PRO-CTCAE","url":"https://healthcaredelivery.cancer.gov/pro-ctcae/"},{"label":"FDA Patient-Focused Drug Development guidance series","url":"https://www.fda.gov/drugs/development-approval-process-drugs/fda-patient-focused-drug-development-guidance-series-enhancing-incorporation-patients-voice-medical"}],"tags":[],"related":["cancer-gov-pdq","nccn","clinicaltrials-gov","idea-moon-navigation-as-a-right","idea-moon-plain-language-consent","idea-moon-results-in-plain-words","idea-moon-certified-decision-aids","idea-moon-patient-designed-trials","idea-moon-financial-toxicity-screening","idea-moon-goals-conversation-trigger","idea-moon-patient-held-cancer-record","idea-moon-funded-second-opinion","idea-moon-recorded-consultations","idea-moon-question-prompt-lists","idea-moon-patient-experience-label","idea-moon-results-back-to-participants","idea-moon-peer-navigator-workforce","idea-moon-time-toxicity-reporting","idea-moon-preference-studies-before-phase3","idea-moon-caregiver-in-the-plan","idea-moon-literacy-first-design-standard","idea-moon-trial-eligibility-at-every-decision"],"cancers":[],"sections":[],"technologies":["ai-trial-matching"],"targets":[],"drugs":[],"companies":["cancer-commons","more-health","patient-data-vault","tempus"],"institutions":["asco","nccn-org","nci"],"pathways":[],"terms":["orr","pfs","os","standard-of-care"],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"stage":"people-culture","severity":"major","metrics":[{"label":"US adults with basic or below-basic health literacy (National Assessment of Adult Literacy 2003)","value":"36%","source":"Kutner et al., National Center for Education Statistics 2006","url":"https://nces.ed.gov/pubs2006/2006483.pdf"},{"label":"Median overall survival with routine patient-reported symptom monitoring vs usual care during chemotherapy for metastatic cancer (randomised)","value":"31.2 vs 26.0 months; not replicated","source":"Basch et al., JAMA 2017; PRO-TECT, JAMA 2022, found no survival difference","url":"https://doi.org/10.1001/jama.2017.7156"},{"label":"Patients who agree to join a trial when one is offered to them, showing the deficit is in offering, not willingness","value":"55%","source":"Unger et al., JNCI 2021","url":"https://doi.org/10.1093/jnci/djaa155"}],"causes":["Clinical information is written for clinicians and consultations are too short to translate it.","No one in the system owns the job of guiding the patient between services.","Symptoms and preferences are not systematically collected, so care is driven by what clinicians observe.","Power asymmetry and fear discourage patients from questioning recommendations or seeking second opinions.","Trial information is scattered across registries written in regulatory language."],"currentEfforts":["PRO-CTCAE (NCI) and the PRO-TECT trial embed patient-reported symptom monitoring into routine care, after Basch's randomised trial showed a survival benefit.","US Medicare began reimbursing principal illness navigation services in 2024, funding patient navigators for cancer.","NCCN Guidelines for Patients translate every major guideline into plain language free of charge.","The FDA Patient-Focused Drug Development guidance series requires sponsors to incorporate patient experience data in development.","AI-based trial matching and patient-facing platforms (Cancer Commons, More Health, Tempus) help patients find trials and second opinions.","Patient-controlled record platforms (Patient Data Vault) give patients their own complete data to share with any clinician or researcher."],"successLooksLike":"Every patient with cancer has a named navigator, plain-language information about their disease and options at a reading level they can use, routine patient-reported outcome monitoring, and a documented shared decision at each treatment choice."},"route":"/bottlenecks/b-patient-voice/","neighbours":{"collection":[{"id":"clinicaltrials-gov","kind":"collection","name":"ClinicalTrials.gov","route":"/collections/clinicaltrials-gov/"},{"id":"nccn","kind":"collection","name":"NCCN Guidelines","route":"/collections/nccn/"},{"id":"cancer-gov-pdq","kind":"collection","name":"NCI PDQ Cancer Information Summaries","route":"/collections/cancer-gov-pdq/"}],"idea":[{"id":"idea-data-donor-card","kind":"idea","name":"A cancer data donor card: patient-controlled donation of records for research","route":"/ideas/idea-data-donor-card/"},{"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-fund-patient-burden-review-criterion","kind":"idea","name":"A formal patient-burden score in grant peer review","route":"/ideas/idea-fund-patient-burden-review-criterion/"},{"id":"idea-moon-funded-second-opinion","kind":"idea","name":"A funded expert second opinion for every new high-stakes or rare cancer diagnosis","route":"/ideas/idea-moon-funded-second-opinion/"},{"id":"idea-moon-literacy-first-design-standard","kind":"idea","name":"A health-literacy certification standard for oncology portals, letters and apps","route":"/ideas/idea-moon-literacy-first-design-standard/"},{"id":"idea-prev-mced-pretest-decision-aid","kind":"idea","name":"A mandatory decision aid before any multi-cancer blood test","route":"/ideas/idea-prev-mced-pretest-decision-aid/"},{"id":"idea-moon-patient-experience-label","kind":"idea","name":"A mandatory patient-experience section in every cancer drug label and approval","route":"/ideas/idea-moon-patient-experience-label/"},{"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-moon-patient-held-cancer-record","kind":"idea","name":"A patient-owned, portable complete cancer record in a standard format","route":"/ideas/idea-moon-patient-held-cancer-record/"},{"id":"idea-data-patient-explainers-per-recommendation","kind":"idea","name":"A plain-language explainer for every guideline recommendation, in every major language","route":"/ideas/idea-data-patient-explainers-per-recommendation/"},{"id":"idea-data-plain-language-summary-mandate","kind":"idea","name":"A plain-language summary of every cancer trial result within a year","route":"/ideas/idea-data-plain-language-summary-mandate/"},{"id":"idea-data-unanswered-questions-registry","kind":"idea","name":"A public registry of unanswered clinical questions linked to funding calls","route":"/ideas/idea-data-unanswered-questions-registry/"},{"id":"idea-tr2-sponsor-transparency-score","kind":"idea","name":"A public transparency score for every trial sponsor, used by sites and patients","route":"/ideas/idea-tr2-sponsor-transparency-score/"},{"id":"idea-moon-treatment-refusal-pathway","kind":"idea","name":"A structured pathway for patients declining proven treatment","route":"/ideas/idea-moon-treatment-refusal-pathway/"},{"id":"idea-acc-aya-survivorship-passport","kind":"idea","name":"A survivorship passport app for adolescent and young adult survivors","route":"/ideas/idea-acc-aya-survivorship-passport/"},{"id":"idea-moon-goals-conversation-trigger","kind":"idea","name":"Algorithm-triggered goals-of-care conversations before crisis","route":"/ideas/idea-moon-goals-conversation-trigger/"},{"id":"idea-nl-ask-about-diet-prebunking","kind":"idea","name":"Ask about diet at diagnosis, and prebunk the myths before the internet does","route":"/ideas/idea-nl-ask-about-diet-prebunking/"},{"id":"idea-acc-caregiver-training-as-covered-service","kind":"idea","name":"Caregiver training and respite as a covered service in cancer care for older patients","route":"/ideas/idea-acc-caregiver-training-as-covered-service/"},{"id":"idea-acc-abandonment-stipends","kind":"idea","name":"Cash for transport and food to stop families abandoning curative treatment","route":"/ideas/idea-acc-abandonment-stipends/"},{"id":"idea-bio2-remote-weight-step-monitoring","kind":"idea","name":"Catch wasting early with a smart scale and a step counter","route":"/ideas/idea-bio2-remote-weight-step-monitoring/"},{"id":"idea-moon-certified-decision-aids","kind":"idea","name":"Certified decision aids required for every preference-sensitive cancer decision","route":"/ideas/idea-moon-certified-decision-aids/"},{"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-tr1-patient-reported-toxicity-dose-algorithms","kind":"idea","name":"Dose adjustments driven by patients' own symptom reports, tested against clinician judgement","route":"/ideas/idea-tr1-patient-reported-toxicity-dose-algorithms/"},{"id":"idea-data-dynamic-consent-app","kind":"idea","name":"Dynamic consent with usage receipts","route":"/ideas/idea-data-dynamic-consent-app/"},{"id":"idea-moon-results-in-plain-words","kind":"idea","name":"Every pathology and genomic report ships with a signed plain-language version","route":"/ideas/idea-moon-results-in-plain-words/"},{"id":"lymphoma-ev-fixed-duration-chemotherapy-free-first-line","kind":"idea","name":"Fixed-duration, chemotherapy-free first-line treatment for the indolent lymphomas","route":"/ideas/lymphoma-ev-fixed-duration-chemotherapy-free-first-line/"},{"id":"idea-moon-caregiver-in-the-plan","kind":"idea","name":"Formal caregiver assessment and training written into every treatment plan","route":"/ideas/idea-moon-caregiver-in-the-plan/"},{"id":"idea-moon-prebunking-at-diagnosis","kind":"idea","name":"Inoculate newly diagnosed patients against common cancer scams","route":"/ideas/idea-moon-prebunking-at-diagnosis/"},{"id":"idea-bio2-patient-partnered-rare-commons","kind":"idea","name":"Let patients themselves donate their records and samples for ultra-rare cancers","route":"/ideas/idea-bio2-patient-partnered-rare-commons/"},{"id":"idea-tr1-paid-community-advisory-boards","kind":"idea","name":"Paid community advisory boards with power to change protocol burden","route":"/ideas/idea-tr1-paid-community-advisory-boards/"},{"id":"idea-moon-peer-navigator-workforce","kind":"idea","name":"Paid survivor peer-navigators as a recognised health workforce role","route":"/ideas/idea-moon-peer-navigator-workforce/"},{"id":"idea-moon-navigation-as-a-right","kind":"idea","name":"Patient navigation as a legal entitlement from the day of diagnosis","route":"/ideas/idea-moon-navigation-as-a-right/"},{"id":"idea-moon-patient-designed-trials","kind":"idea","name":"Patient panels approve trial burden and endpoints as a condition of funding","route":"/ideas/idea-moon-patient-designed-trials/"},{"id":"idea-fund-portable-patient-consent","kind":"idea","name":"Patient-held portable consent for reusing samples and data across studies","route":"/ideas/idea-fund-portable-patient-consent/"},{"id":"idea-moon-trial-eligibility-at-every-decision","kind":"idea","name":"Patients are told which trials they qualify for at every treatment decision, in writing","route":"/ideas/idea-moon-trial-eligibility-at-every-decision/"},{"id":"idea-data-patient-facing-model-cards","kind":"idea","name":"Patients told which AI is used in their 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alerts when the standard of care changes for a patient's situation","route":"/ideas/idea-data-standard-of-care-change-alerts/"},{"id":"idea-prev-gleason6-terminology-rct","kind":"idea","name":"Test whether calling Gleason 6 'not cancer' changes what men choose","route":"/ideas/idea-prev-gleason6-terminology-rct/"},{"id":"idea-tr1-ttf-and-qol-coprimary","kind":"idea","name":"Time to treatment failure and quality of life as co-primary endpoints in non-curative trials","route":"/ideas/idea-tr1-ttf-and-qol-coprimary/"},{"id":"idea-acc-serious-illness-conversation-prompts","kind":"idea","name":"Train every oncology team in serious-illness conversations and prompt them in the record","route":"/ideas/idea-acc-serious-illness-conversation-prompts/"},{"id":"idea-moon-patient-community-moderators","kind":"idea","name":"Trained moderators with evidence tools in online patient communities","route":"/ideas/idea-moon-patient-community-moderators/"},{"id":"idea-moon-plain-language-consent","kind":"idea","name":"Two-page plain-language consent with teach-back for every cancer trial and treatment","route":"/ideas/idea-moon-plain-language-consent/"},{"id":"idea-moon-pro-monitoring-standard","kind":"idea","name":"Weekly symptom check-ins with automatic alerts as standard of care on treatment","route":"/ideas/idea-moon-pro-monitoring-standard/"}],"technology":[{"id":"ai-trial-matching","kind":"technology","name":"AI trial matching & clinical decision support","route":"/technologies/ai-trial-matching/"},{"id":"rejuv-measure-epro-as-treatment","kind":"technology","name":"Asking people how they are, every week, as a treatment in its own right","route":"/technologies/rejuv-measure-epro-as-treatment/"},{"id":"rejuv-measure-breast-q","kind":"technology","name":"BREAST-Q and the Q-portfolio: measuring what an operation left 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diets)","route":"/terms/unproven-diet-claims/"}],"paper":[{"id":"paper-basch-epro-survival-jama-2017","kind":"paper","name":"Basch: asking patients to report symptoms online during chemotherapy improved survival","route":"/key-papers/paper-basch-epro-survival-jama-2017/"},{"id":"paper-loeb-overdiagnosis-overtreatment-prostate-eur-urol-2014","kind":"paper","name":"Overdiagnosis and overtreatment of prostate cancer","route":"/key-papers/paper-loeb-overdiagnosis-overtreatment-prostate-eur-urol-2014/"},{"id":"paper-prasad-surrogate-endpoints-jama-im-2015","kind":"paper","name":"Prasad: most surrogate endpoints in cancer trials correlate poorly with survival","route":"/key-papers/paper-prasad-surrogate-endpoints-jama-im-2015/"},{"id":"paper-prima-final-rituximab-maintenance-follicular-jco-2019","kind":"paper","name":"Sustained progression-free survival benefit of rituximab maintenance in patients with follicular lymphoma: long-term results of the PRIMA 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