# Patients lack understanding, navigation and agency

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

## TL;DR

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.

## Fields

- Kind: Bottleneck
- Last checked: 2026-09-08
- Stage: people-culture
- Severity: major
- Metrics: US adults with basic or below-basic health literacy (National Assessment of Adult Literacy 2003): 36% (Kutner et al., National Center for Education Statistics 2006); Median overall survival with routine patient-reported symptom monitoring vs usual care during chemotherapy for metastatic cancer (randomised): 31.2 vs 26.0 months; not replicated (Basch et al., JAMA 2017; PRO-TECT, JAMA 2022, found no survival difference); Patients who agree to join a trial when one is offered to them, showing the deficit is in offering, not willingness: 55% (Unger et al., JNCI 2021)
- 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.

## Sources

- Basch et al., Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment (JAMA 2017): https://doi.org/10.1001/jama.2017.7156
- NCCN Guidelines for Patients: https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients
- NCI PRO-CTCAE: https://healthcaredelivery.cancer.gov/pro-ctcae/
- FDA Patient-Focused Drug Development guidance series: https://www.fda.gov/drugs/development-approval-process-drugs/fda-patient-focused-drug-development-guidance-series-enhancing-incorporation-patients-voice-medical

## Connected records

- collections: [ClinicalTrials.gov](https://onco.cc/collections/clinicaltrials-gov/), [NCCN Guidelines](https://onco.cc/collections/nccn/), [NCI PDQ Cancer Information Summaries](https://onco.cc/collections/cancer-gov-pdq/)
- ideas: [A cancer data donor card: patient-controlled donation of records for research](https://onco.cc/ideas/idea-data-donor-card/), [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 formal patient-burden score in grant peer review](https://onco.cc/ideas/idea-fund-patient-burden-review-criterion/), [A funded expert second opinion for every new high-stakes or rare cancer diagnosis](https://onco.cc/ideas/idea-moon-funded-second-opinion/), [A health-literacy certification standard for oncology portals, letters and apps](https://onco.cc/ideas/idea-moon-literacy-first-design-standard/), [A mandatory decision aid before any multi-cancer blood test](https://onco.cc/ideas/idea-prev-mced-pretest-decision-aid/), [A mandatory patient-experience section in every cancer drug label and approval](https://onco.cc/ideas/idea-moon-patient-experience-label/), [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-owned, portable complete cancer record in a standard format](https://onco.cc/ideas/idea-moon-patient-held-cancer-record/), [A plain-language explainer for every guideline recommendation, in every major language](https://onco.cc/ideas/idea-data-patient-explainers-per-recommendation/), [A plain-language summary of every cancer trial result within a year](https://onco.cc/ideas/idea-data-plain-language-summary-mandate/), [A public registry of unanswered clinical questions linked to funding calls](https://onco.cc/ideas/idea-data-unanswered-questions-registry/), [A public transparency score for every trial sponsor, used by sites and patients](https://onco.cc/ideas/idea-tr2-sponsor-transparency-score/), [A structured pathway for patients declining proven treatment](https://onco.cc/ideas/idea-moon-treatment-refusal-pathway/), [A survivorship passport app for adolescent and young adult survivors](https://onco.cc/ideas/idea-acc-aya-survivorship-passport/), [Algorithm-triggered goals-of-care conversations before crisis](https://onco.cc/ideas/idea-moon-goals-conversation-trigger/), [Ask about diet at diagnosis, and prebunk the myths before the internet does](https://onco.cc/ideas/idea-nl-ask-about-diet-prebunking/), [Caregiver training and respite as a covered service in cancer care for older patients](https://onco.cc/ideas/idea-acc-caregiver-training-as-covered-service/), [Cash for transport and food to stop families abandoning curative treatment](https://onco.cc/ideas/idea-acc-abandonment-stipends/), [Catch wasting early with a smart scale and a step counter](https://onco.cc/ideas/idea-bio2-remote-weight-step-monitoring/), [Certified decision aids required for every preference-sensitive cancer decision](https://onco.cc/ideas/idea-moon-certified-decision-aids/), [Decision aids built into the record for every preference-sensitive cancer choice](https://onco.cc/ideas/idea-acc-embedded-decision-aids/), [Dose adjustments driven by patients' own symptom reports, tested against clinician judgement](https://onco.cc/ideas/idea-tr1-patient-reported-toxicity-dose-algorithms/), [Dynamic consent with usage receipts](https://onco.cc/ideas/idea-data-dynamic-consent-app/), [Every pathology and genomic report ships with a signed plain-language version](https://onco.cc/ideas/idea-moon-results-in-plain-words/), [Fixed-duration, chemotherapy-free first-line treatment for the indolent lymphomas](https://onco.cc/ideas/lymphoma-ev-fixed-duration-chemotherapy-free-first-line/), [Formal caregiver assessment and training written into every treatment plan](https://onco.cc/ideas/idea-moon-caregiver-in-the-plan/), [Inoculate newly diagnosed patients against common cancer scams](https://onco.cc/ideas/idea-moon-prebunking-at-diagnosis/), [Let patients themselves donate their records and samples for ultra-rare cancers](https://onco.cc/ideas/idea-bio2-patient-partnered-rare-commons/), [Paid community advisory boards with power to change protocol burden](https://onco.cc/ideas/idea-tr1-paid-community-advisory-boards/), [Paid survivor peer-navigators as a recognised health workforce role](https://onco.cc/ideas/idea-moon-peer-navigator-workforce/), [Patient navigation as a legal entitlement from the day of diagnosis](https://onco.cc/ideas/idea-moon-navigation-as-a-right/), [Patient panels approve trial burden and endpoints as a condition of funding](https://onco.cc/ideas/idea-moon-patient-designed-trials/), [Patient-held portable consent for reusing samples and data across studies](https://onco.cc/ideas/idea-fund-portable-patient-consent/), [Patients are told which trials they qualify for at every treatment decision, in writing](https://onco.cc/ideas/idea-moon-trial-eligibility-at-every-decision/), [Patients told which AI is used in their care, in plain language](https://onco.cc/ideas/idea-data-patient-facing-model-cards/), [Plain-language trial results returned to every participant within a year](https://onco.cc/ideas/idea-moon-results-back-to-participants/), [Qualify a physical function endpoint so anti-wasting drugs can be approved](https://onco.cc/ideas/idea-bio2-cachexia-function-endpoint/), [Quantitative patient preference studies set the benefit-risk bar before phase 3](https://onco.cc/ideas/idea-moon-preference-studies-before-phase3/), [Question prompt lists sent to patients before every major consultation](https://onco.cc/ideas/idea-moon-question-prompt-lists/), [Recorded, AI-summarised consultations given to patients by default](https://onco.cc/ideas/idea-moon-recorded-consultations/), [Report time toxicity, the days a treatment consumes, in every trial and decision aid](https://onco.cc/ideas/idea-moon-time-toxicity-reporting/), [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 financial toxicity at diagnosis and refer like any other symptom](https://onco.cc/ideas/idea-moon-financial-toxicity-screening/), [Screen every patient for money trouble the way we screen for pain](https://onco.cc/ideas/idea-cost-financial-toxicity-screening/), [Subscribable alerts when the standard of care changes for a patient's situation](https://onco.cc/ideas/idea-data-standard-of-care-change-alerts/), [Test whether calling Gleason 6 'not cancer' changes what men choose](https://onco.cc/ideas/idea-prev-gleason6-terminology-rct/), [Time to treatment failure and quality of life as co-primary endpoints in non-curative trials](https://onco.cc/ideas/idea-tr1-ttf-and-qol-coprimary/), [Train every oncology team in serious-illness conversations and prompt them in the record](https://onco.cc/ideas/idea-acc-serious-illness-conversation-prompts/), [Trained moderators with evidence tools in online patient communities](https://onco.cc/ideas/idea-moon-patient-community-moderators/), [Two-page plain-language consent with teach-back for every cancer trial and treatment](https://onco.cc/ideas/idea-moon-plain-language-consent/), [Weekly symptom check-ins with automatic alerts as standard of care on treatment](https://onco.cc/ideas/idea-moon-pro-monitoring-standard/)
- technologies: [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/), [BREAST-Q and the Q-portfolio: measuring what an operation left behind](https://onco.cc/technologies/rejuv-measure-breast-q/), [EORTC QLQ-C30: the questionnaire most cancer trials use](https://onco.cc/technologies/rejuv-measure-eortc-qlq-c30/), [EQ-5D: health reduced to one number, and what that number is for](https://onco.cc/technologies/rejuv-measure-eq-5d/), [Facial reconstruction and facial prostheses: ears, orbits and noses](https://onco.cc/technologies/rejuv-recon-facial-prosthetics/), [FACT-G and the FACIT family: the other main questionnaire](https://onco.cc/technologies/rejuv-measure-fact-and-facit/), [Going back to driving, lifting and exercise](https://onco.cc/technologies/rejuv-rehab-driving-and-exercise-return/), [How recovery is measured: the questionnaires behind the numbers](https://onco.cc/technologies/rejuv-measure-patient-reported-outcomes/), [Measuring fear of recurrence: the FCRI and its cut-off](https://onco.cc/technologies/rejuv-measure-fear-of-recurrence-inventory/), [Measuring memory and concentration after treatment](https://onco.cc/technologies/rejuv-measure-cognitive-function/), [Peer support and support groups](https://onco.cc/technologies/peer-support-groups/), [PRO-CTCAE: side effects graded by the person having them](https://onco.cc/technologies/rejuv-measure-pro-ctcae/), [PROMIS: the item banks that let a short questionnaire be precise](https://onco.cc/technologies/rejuv-measure-promis/), [Services built for teenagers and young adults, and what the national evaluation found](https://onco.cc/technologies/rejuv-ayac-services/), [The devices that do the restoring, and who pays for them](https://onco.cc/technologies/rejuv-rehab-assistive-devices/), [The gap between the rehabilitation people need and the rehabilitation they are offered](https://onco.cc/technologies/rejuv-rehab-provision-gap/), [The questionnaires that were never returned, and the people never asked](https://onco.cc/technologies/rejuv-measure-missing-data-and-who-is-not-asked/), [Voice after the larynx is removed](https://onco.cc/technologies/rejuv-recon-voice-after-laryngectomy/), [Wearables and step counts: measuring what someone actually does](https://onco.cc/technologies/rejuv-measure-wearables-and-step-counts/), [What a difference has to be before a person would notice it](https://onco.cc/technologies/rejuv-measure-minimally-important-difference/), [Where rehabilitation is commissioned, and who misses out](https://onco.cc/technologies/rejuv-rehab-commissioning-inequity/)
- companies: [Cancer Commons](https://onco.cc/companies/cancer-commons/), [MORE Health](https://onco.cc/companies/more-health/), [Patient Data Vault (data-vault.health)](https://onco.cc/companies/patient-data-vault/), [Tempus AI](https://onco.cc/companies/tempus/)
- institutions: [American Society of Clinical Oncology (ASCO)](https://onco.cc/institutions/asco/), [Bowelbabe Fund for Cancer Research UK](https://onco.cc/institutions/bowelbabe-fund/), [International Society for Quality of Life Research](https://onco.cc/institutions/isoqol/), [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/), [National Comprehensive Cancer Network (NCCN)](https://onco.cc/institutions/nccn-org/), [UNC Lineberger Comprehensive Cancer Center](https://onco.cc/institutions/unc-lineberger/)
- terms: [Abigail Alliance v. von Eschenbach (2007)](https://onco.cc/terms/abigail-alliance/), [Objective response rate (ORR)](https://onco.cc/terms/orr/), [Overall survival (OS)](https://onco.cc/terms/os/), [Overtreatment](https://onco.cc/terms/overtreatment/), [Progression-free survival (PFS)](https://onco.cc/terms/pfs/), [Right to Try Act 2018 and state right-to-try laws](https://onco.cc/terms/right-to-try/), [Standard of care](https://onco.cc/terms/standard-of-care/), [Unproven diet claims (alkaline, juice, 'anti-cancer' diets)](https://onco.cc/terms/unproven-diet-claims/)
- key papers: [Basch: asking patients to report symptoms online during chemotherapy improved survival](https://onco.cc/key-papers/paper-basch-epro-survival-jama-2017/), [Overdiagnosis and overtreatment of prostate cancer](https://onco.cc/key-papers/paper-loeb-overdiagnosis-overtreatment-prostate-eur-urol-2014/), [Prasad: most surrogate endpoints in cancer trials correlate poorly with survival](https://onco.cc/key-papers/paper-prasad-surrogate-endpoints-jama-im-2015/), [Sustained progression-free survival benefit of rituximab maintenance in patients with follicular lymphoma: long-term results of the PRIMA study](https://onco.cc/key-papers/paper-prima-final-rituximab-maintenance-follicular-jco-2019/), [USPSTF 2018: screening for prostate cancer, recommendation statement (grade C at 55 to 69, grade D at 70 and over)](https://onco.cc/key-papers/paper-uspstf-prostate-screening-jama-2018/)
- trials: [PRIMA](https://onco.cc/trials/prima-follicular/)
- people: [Ashya King](https://onco.cc/people/ashya-king/), [Audre Lorde](https://onco.cc/people/audre-lorde/), [Betty Ford](https://onco.cc/people/betty-ford/), [Dame Deborah James](https://onco.cc/people/deborah-james/), [Debra Black](https://onco.cc/people/debra-black/), [Elisabeth Kübler-Ross](https://onco.cc/people/elisabeth-kubler-ross/), [Fran Visco](https://onco.cc/people/fran-visco/), [Henrietta Lacks](https://onco.cc/people/henrietta-lacks/), [Jimmie Holland](https://onco.cc/people/jimmie-holland/), [Kate Granger](https://onco.cc/people/kate-granger/), [Kris Hallenga](https://onco.cc/people/kris-hallenga/), [Lance Armstrong](https://onco.cc/people/lance-armstrong/), [Randy Pausch](https://onco.cc/people/randy-pausch/), [Rose Kushner](https://onco.cc/people/rose-kushner/), [Sir Chris Hoy](https://onco.cc/people/chris-hoy/), [Stephen Sutton](https://onco.cc/people/stephen-sutton/), [Steve Jobs](https://onco.cc/people/steve-jobs/), [Susan Love](https://onco.cc/people/susan-love/)

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JSON: https://onco.cc/api/v1/entities/b-patient-voice.json