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After treatment and remission

How to keep your records

Leukaemia treatment creates many documents over the years. Well-organised records quickly help a new doctor, emergency services and a centre abroad.

Last updated: ~1 min read
A binder and a cloud.
Figure 1.Paper and digital — How to keep your records

01Short answer

Set up one main binder with sections: summary, diagnosis and genetics, treatment, transfusions, transplant, test results, imaging, vaccines and current medicines. Scan everything and keep it somewhere secure (a password-protected device, encrypted cloud storage or the hospital portal). Carry a short emergency card in your wallet with your diagnosis, main medicines, allergies, special blood requirements and your doctor’s phone number. Keep originals at home and bring copies to appointments.

02Simple explanation

One main binder.

Digital copies kept securely.

An emergency card in your wallet.

Originals at home.

Update regularly.

03Scientific explanation

Personal health record: MedlinePlus notes that personal records reduce information gaps between different doctors.

Privacy: medical data is sensitive; do not keep it in open messaging apps or on shared computers.

Portals: many hospitals provide results in an online portal; download them and add them to your own archive.

04What happens in the body?

Paper and digital

You need both: paper works without power or internet; digital helps when travelling.

Privacy

Use passwords, two-step sign-in and trusted storage.

A padlock on a folder.
Figure 2.Privacy — How to keep your records

Emergency card

A few lines: diagnosis, medicines, allergies, doctor’s number.

A card peeking from a wallet.
Figure 3.Emergency card — How to keep your records

Sections

Always the same order, so you can find a document quickly.

05Building your archive

Four steps.

One binder — Everything in one place.1One binderEverything in one place.
Scan — Digital copies.2ScanDigital copies.
Protect — Protect access.3ProtectProtect access.
Card — Carry an emergency card.4CardCarry an emergency card.
OrderEverything can be found.
PrivacyData is protected.
ReadinessIt helps in an emergency.

06Key points at a glance

TopicIn brief
Paper and digitalYou need both: paper works without power or internet; digital helps when travelling.
PrivacyUse passwords, two-step sign-in and trusted storage.
Emergency cardA few lines: diagnosis, medicines, allergies, doctor’s number.
SectionsAlways the same order, so you can find a document quickly.

07Key terms

Personal health record
A medical archive you keep yourself.
Patient portal
A hospital’s online system.
Encryption
Protecting data from outside access.
Emergency card
A short card with medical details.
Original
The official signed document.

08Key points

  • Set up one binder.
  • Scan everything.
  • Store it securely.
  • Carry an emergency card.
  • Keep it updated.

09Frequently asked questions

How long should I keep records?

Key documents for life; late effects can appear years later.

Should my family have access?

It helps if one trusted person knows where they are.

What if I lose my phone?

That is why a paper copy and a backup matter.

Does this information replace medical advice?

No. This is general education; only your treating doctor can assess your situation.

10Questions for your doctor

Take these questions to your appointment. The ones you save are collected on the “My questions” page and stay on this device only.

  1. How long should I keep records?

  2. Should my family have access?

  3. What if I lose my phone?

  4. Does this information replace medical advice?

My questions

12Sources

  1. MedlinePlus (U.S. National Library of Medicine). Personal Health Records
  2. Cancer.Net (ASCO). ASCO Cancer Treatment and Survivorship Care Plans
  3. National Cancer Institute (NCI). Follow-Up Medical Care
  4. Cancer.Net (ASCO). Follow-Up Care After Cancer Treatment
  5. National Cancer Institute (NCI). Cancer Survivorship
  6. Journal of Clinical Endocrinology & Metabolism, 2018. Sklar CA et al. Hypothalamic–Pituitary and Growth Disorders in Survivors of Childhood Cancer: An Endocrine Society Clinical Practice Guideline
  7. MedlinePlus (U.S. National Library of Medicine). Growth Hormone Deficiency
  8. MedlinePlus (U.S. National Library of Medicine). Hypopituitarism
  9. MedlinePlus (U.S. National Library of Medicine). Premature ovarian failure
  10. MedlinePlus (U.S. National Library of Medicine). Hypogonadism
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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