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Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
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.
Like an organ donor card, anyone with cancer could sign once to let their medical records and leftover samples be used for research, and change their mind at any time.
A positive leftover-cancer blood test leaves patients frightened and their doctors unsure what to do. A specialist clinic could give them a plan and a trial.
People with dementia who develop cancer are often either overtreated or written off, and decisions are made without them. A clear pathway for assessment, consent and treatment planning would improve both.
Add a scored criterion to grant review that asks how much suffering the proposal addresses and how soon, judged partly by patients, and give it real weight.
Anyone diagnosed with a rare or complex cancer gets an automatic remote review by a specialist centre, paid for by the health system, before treatment starts.
Cancer information tools must meet a tested standard: reading age around 12, main languages of the population, audio versions and clear numbers, or they are not certified for use.
People are told a blood test can find fifty cancers, but not how many false alarms or how much is unknown. A short, tested decision aid before the test would make consent real.
The official information about a new cancer drug must include what patients on the trial actually reported about side-effects and daily life, not only survival curves.
Every newly diagnosed patient gets a named person whose job is to get them through appointments, tests, paperwork and money problems. Insurers should pay for it because it prevents delays and dropouts.
Your entire cancer history, including scans, pathology, genomics and treatments, lives in a record you control and can share in one click with any hospital, trial or second-opinion service.
For each treatment recommendation in the guidelines, publish a short explanation patients can read in their own language: what it is, why it is recommended, and what the evidence says.
Every cancer trial would have to publish a short, clear summary that patients can understand, within twelve months of results, in one public place.
Keep a public list of the questions doctors and patients most need answered but no trial addresses, and tie research funding to it.
Rate sponsors on whether they publish their results, share data and register outcomes honestly. Hospitals and patients can then prefer sponsors that behave well.
When someone refuses recommended treatment, do not just record it. Offer a second conversation, address the beliefs behind it, keep the door open and track what happens.
Adolescent and young adult survivors live longest with late effects and are the group most often lost to follow-up as they change doctors over decades. A phone app version of Europe's Survivorship Passport, holding treatment history, exposure-based risk explanations and screening reminders, would travel with them for life.
When a prediction model says a patient has a high chance of dying within a year, their team is prompted to have a structured conversation about what matters to them, while there is still time to act on it.
Almost every newly diagnosed patient searches for what to eat and finds sugar-starvation, alkaline and juice-cure claims. If the oncology team asks about diet first and hands over good information, the myths have less room.
Older cancer patients depend on family carers who receive no training or support. Paying for carer training and short breaks would keep patients at home and out of hospital.
Treatment abandonment is the leading cause of treatment failure for childhood cancer in much of the low- and middle-income world, driven by bus fares, lost income and the cost of food and lodging. Conditional cash, transport vouchers and family accommodation have cut abandonment sharply in Central America, East Africa and India, and should be funded in every curative protocol.
Slow weight loss and falling daily activity are the first signs of cancer wasting, and both can be measured at home. An alert could bring help months earlier.
For choices where the right answer depends on what the patient values (watching a slow prostate cancer, adjuvant chemo at 80, breast reconstruction), a tested decision aid becomes part of the consultation.
Choices like mastectomy versus lumpectomy, or whether to have chemotherapy after surgery, depend on what matters to the patient. Good decision aids exist but are rarely used; building them into the clinic workflow would change that.
Patients report symptoms on their phone each week; a set of rules turns severe or worsening symptoms into a dose hold or reduction before the next clinic visit. This could keep people on treatment longer and feeling better.
An app where patients choose what their data can be used for, see every time it is used, and can switch permissions on or off.
When your biopsy or gene test comes back, you get a version written for you, drafted by software and checked and signed by your clinician, alongside the technical report.
Several treatments now work without chemotherapy, but most are given until the disease comes back. Giving them for a fixed time and stopping is the version patients would choose.
The person looking after a cancer patient at home is assessed, trained (medicines, symptoms, when to call) and supported as part of the plan, not left to work it out.
In the first weeks after diagnosis, tell patients plainly what kinds of false claims and expensive unproven clinics they will encounter and how to spot them.
Patients with ultra-rare cancers are scattered across countries, beyond any single hospital's reach. Patient-driven projects that recruit online, post saliva and tumour sample kits and release data openly have already produced genomic findings in angiosarcoma; sustainability and international consent rules are the open problems.
Before a trial is finalised, a paid panel of patients and community members from the groups the trial needs would review it and could require changes to visit schedules, procedures and materials that would deter people like them.
Train and pay people who have been through cancer to guide newly diagnosed patients through the system, especially where oncologists and nurses are scarce.
Every person told they have cancer gets a named navigator, by law, who helps them understand options, book appointments, find trials and deal with money and work.
Before a trial is funded, patients who have had the disease sign off on how many visits, scans and blood draws it demands, and on whether the endpoints measure things that matter to them.
Patients would carry a digital consent that says how their trial samples and records may be reused, so their contribution is not locked to one company or study and they decide who benefits from it.
At each point where treatment is chosen, software checks the patient's record against open trials and the clinician must note which were discussed, so trials stop being something only some people hear about.
Every patient would be able to see which AI tools were used in their diagnosis or treatment plan, what they do, how well they work and how to question them.
If you join a cancer trial you should be told what it found, in plain words, within twelve months of the results, including if the treatment did not work.
Regulators are unsure what to accept as proof that an anti-wasting drug helps. Agreeing on a simple measure such as stair climbing would unblock the whole field.
Before a big trial starts, ask hundreds of patients how much extra survival they would trade for a given side-effect, so the trial is designed to test something patients would actually want.
Before a results or treatment-planning appointment, patients receive a list of good questions to ask, tailored to their situation, and can tick the ones they want covered.
Every cancer consultation is recorded with consent and the patient receives the audio plus a checked written summary of what was said and decided.
Alongside how many months a treatment adds, patients should be told how many days it takes from them in clinics, infusions, scans and recovery.
Cancer often ruins families financially, and money worries make people skip treatment. Ask about finances at the first visit, as routinely as asking about allergies, and route people to assistance.
Ask about money problems with a short validated questionnaire when treatment starts, and route those at risk to financial navigators before bills cause missed doses.
People with cancer are far more likely to go bankrupt than people without, and the ones who do have worse survival; a two-question screen at diagnosis plus a financial navigator catches the problem while it can still be fixed.
Doctors and patients could subscribe to a specific cancer, stage and biomarker and be told, with sources, the moment the recommended treatment changes for that situation.
Gleason 6 prostate lesions do not metastasise. A trial could show whether describing them without the word cancer leads more men to choose monitoring.
For treatments that will not cure, what matters is how long the treatment keeps working without becoming unbearable, and how the person feels. Trials should measure both of those as their main results.
Patients with advanced cancer often never have a clear conversation about what to expect and what matters to them. A structured conversation guide, taught to clinicians and prompted by the record, makes these talks happen earlier.
Online patient groups are where much cancer advice is exchanged. Fund and train moderators, with quick access to reliable evidence, to keep those spaces accurate and kind.
Replace 30-page consent forms with a short plain summary the patient explains back in their own words before signing, so consent means understanding.
Patients on chemotherapy or immunotherapy answer a short weekly symptom questionnaire on their phone; severe answers alert the nurse the same day. Trials show this prolongs life.
The number to give a patient deciding about maintenance: a median of six and a half extra years before the next treatment, and no difference in how long they live. Both halves belong in the conversation.
The current shape of the screening question in the United States, and the best short statement of the trade-off in numbers a man can weigh. The three-to-one ratio between metastatic cases prevented and deaths prevented is also the argument for using metastatic presentation, not mortality, to judge a screening programme sooner.
Routinely asking patients how they feel between visits, and acting on the answers, is a treatment in itself. It catches problems early, keeps people on effective therapy longer and appears to extend life. Cancer centres now build symptom monitoring into electronic records, though implementation is uneven.
A drug that shrinks tumours or delays progression on scans has not necessarily been shown to help patients live longer or better. Patients and clinicians should ask what the endpoint was; regulators should insist on timely confirmatory trials; and trialists should validate surrogates before relying on them.
The honest state of the overdiagnosis question. Prostate cancer is common in the prostates of men who die of something else, screening finds a proportion of it, and how much of that is harm depends on what is done next. The fix is not a better estimate but fewer treatments for the cancers that do not need them.
Shares BREAST-Q and the Q-portfolio: measuring what an operation left behind, Voice after the larynx is removed, Facial reconstruction and facial prostheses: ears, orbits and noses, Measuring fear of recurrence: the FCRI and its cut-off.
Shares A structured pathway for patients declining proven treatment, Trained moderators with evidence tools in online patient communities, Inoculate newly diagnosed patients against common cancer scams, A mandatory decision aid before any multi-cancer blood test.
Shares Recorded, AI-summarised consultations given to patients by default, A public registry of unanswered clinical questions linked to funding calls, Subscribable alerts when the standard of care changes for a patient's situation, Kris Hallenga.
Shares Dose adjustments driven by patients' own symptom reports, tested against clinician judgement, Report time toxicity, the days a treatment consumes, in every trial and decision aid, Weekly symptom check-ins with automatic alerts as standard of care on treatment, Kate Granger.
Shares Patient navigation as a legal entitlement from the day of diagnosis, A defined pathway for patients with both dementia and cancer, A paid patient navigator for every new cancer diagnosis, reimbursed as a service, A dedicated clinic for people whose blood test says the cancer is back.
Shares Formal caregiver assessment and training written into every treatment plan, Sir Chris Hoy, Lance Armstrong, Voice after the larynx is removed.
Shares Patient panels approve trial burden and endpoints as a condition of funding, Quantitative patient preference studies set the benefit-risk bar before phase 3, Fran Visco, Rose Kushner.
Shares A health-literacy certification standard for oncology portals, letters and apps, Paid community advisory boards with power to change protocol burden, Audre Lorde, A paid patient navigator for every new cancer diagnosis, reimbursed as a service.