# Make the treatment exposure record machine-readable, so surveillance can be computed

Source: https://onco.cc/ideas/idea-rejuv-exposure-record-a-machine-can-read/  
OnCo record `idea-rejuv-exposure-record-a-machine-can-read` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Risk-based follow-up guidelines key surveillance to cumulative dose and radiotherapy field. Survivors frequently cannot obtain either, so the guidelines are unusable even where someone is willing to follow them.

## Summary

The Children's Oncology Group Long-Term Follow-Up Guidelines and their harmonised international equivalents are indexed by exposure: this cumulative anthracycline dose implies this echocardiogram interval, this radiotherapy field implies this surveillance. The guidelines are good. The input is missing. Survivors frequently do not have their radiotherapy fields and doses recorded anywhere they can reach, and the commonest failure in revaccination after transplant is that neither the centre nor the general practice believes the schedule is theirs.

What is proposed is narrow and technical: a structured exposure record generated automatically from the treatment system at the end of treatment, containing cumulative doses by agent, radiotherapy fields and doses, surgical procedures and transplant conditioning, in a format another system can query. From that, the due surveillance for any given year can be computed rather than looked up, which is what turns a guideline into a reminder.

This is deliberately not a survivorship care plan. That instrument was mandated and then failed its randomised trials, and the 2018 review's recommendation was to focus on whether the recommendations in a plan are subsequently acted on. A document is read once; a machine-readable exposure record can be queried every year by whoever is looking after the person, which is a different thing with a different failure mode.

## Fields

- Kind: Idea
- Last checked: 2026-10-02
- Tags: rejuvenation; survivorship; open-problem; data; follow-up
- Hypothesis: A structured, machine-readable exposure record generated at the end of treatment increases the proportion of survivors who receive the surveillance their exposures imply, which a document handed over at discharge did not.
- Rationale: Risk-based guidelines exist and are not followed: the largest survey of its kind concluded that the majority of childhood cancer survivors do not receive recommended risk-based care, and 94 per cent of physicians reported unmet information needs about survivors' late-effect risks. The 2018 systematic review of survivorship care plans found little evidence of benefit and recommended that research move to whether recommendations are acted on. The missing component in both findings is a queryable exposure record.
- Proposed test: Implement automatic exposure-record generation in one cancer centre's treatment system, feed computed surveillance reminders to the survivor and their general practitioner, and measure guideline-concordant surveillance against a matched comparison centre at two and five years.
- Maturity: early-clinical
- Actor: data

## Sources

- Landier et al., Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines (JCO 2004;22:4979-4990): https://doi.org/10.1200/JCO.2004.11.032
- Jacobsen et al., Systematic review of the impact of cancer survivorship care plans on health outcomes and health care delivery (JCO 2018;36:2088-2100): https://doi.org/10.1200/JCO.2018.77.7482
- Children's Oncology Group Long-Term Follow-Up Guidelines: http://www.survivorshipguidelines.org/

## Connected records

- technologies: [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [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/), [Who is supposed to be watching: EBMT, CIBMTR, FACT-JACIE, and what a survivor is actually offered](https://onco.cc/technologies/rejuv-tx-long-term-follow-up-frameworks/)
- ideas: [A survivorship passport app for adolescent and young adult survivors](https://onco.cc/ideas/idea-acc-aya-survivorship-passport/), [Survivorship care plans generated automatically from the treatment record](https://onco.cc/ideas/idea-acc-auto-generated-survivorship-plans/)
- collections: [International Guideline Harmonization Group for late effects of childhood cancer](https://onco.cc/collections/ighg/)
- roadmaps: [Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it](https://onco.cc/roadmaps/rejuvenation-roadmap/)
- fronts: [Recovery & Rejuvenation](https://onco.cc/fronts/rejuvenation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Fragmented care and guideline gaps](https://onco.cc/bottlenecks/b-care-fragmentation/), [Nobody owns the follow-up once the oncology clinic lets go](https://onco.cc/bottlenecks/rejuv-agenda-nobody-owns-the-follow-up/), [Registries count diagnoses and deaths, and not what treatment left behind](https://onco.cc/bottlenecks/rejuv-agenda-late-effects-are-not-counted/)
- trials: [AlloCare: a stepped-care late-effects service after allogeneic transplant](https://onco.cc/trials/rejuv-trial-allocare/)

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