Open questions

This page exists only while the website is a draft. It lists every open question on the site, page by page. Each question also appears on its page in a yellow box.

36 questions remain.

About the Registry

  1. Which purposes should be listed here, and in what words? The current s.251 drafts also refer to equity-of-access analysis, commissioner reporting and evaluative commissioning, alongside surveillance and research.
  2. Who should be named as the Registry's data controller? This has not yet been decided. The options are NHS England alone, NHS England and The Christie jointly, or the two treating Trusts. This page, the privacy notice and the site footer must all follow the decision, including the footer's copyright line, which currently shows the design system's default, "© NHS England".
  3. Can we use a photograph of The Christie Proton Beam Therapy Centre exterior? A candidate image should be requested from The Christie's communications team, with written permission to reuse it on this site and the credit line they require.
  4. Can we use a photograph of the UCLH proton beam therapy centre exterior? A candidate image should be requested from UCLH's communications team, with written permission to reuse it on this site and the credit line they require.
  5. Please confirm the dates on this page: did the Proton Overseas Programme begin in 2008, did The Christie begin treating patients in 2018, and in which year did UCLH begin treating patients?
  6. How should the Registry's governance be described for a public audience? For example, should the page explain the Joint Data Committee's role, name the organisations represented on DMAC, and say that DMAC's terms of reference are in draft?
  7. What is the agreed wording for the Registry's legal basis and the current status of its s.251 application? The same wording will appear here, on the patient information page and in the privacy notice. It must not imply that support has been granted before it has. See the privacy notice for the full position once agreed.
  8. Is this roadmap accurate and agreed for publication, including the mention of OMOP?

Our data

  1. Should headline figures be shown exactly, as they are now, or rounded (for example to the nearest 5)? The note at the top of this page should state whichever disclosure-control rule the Registry adopts.
  2. Do these counts include everyone referred to a provider, or only patients who were treated? The Registry's cohort is every referral forwarded to a provider (or, under the Proton Overseas Programme, to a centre abroad), whether or not the patient was treated.
  3. Are the item groups and statuses below correct? They were drafted before the full data items catalogue for the s.251 application. Should this page instead be generated from that catalogue, so the two cannot drift apart?
  4. How many UCLH patients does the Registry hold?
  5. How complete is the recording of stage, grade and laterality?
  6. How complete is the recording of concurrent systemic therapy?
  7. What is the scope of patient-reported outcome measures, and should this group appear at all if nothing is yet collected?
  8. What should the data quality statement say? For example: completeness by cohort, validation checks on each submission, the coding standards in use, and whether to mention plans for mapping to international standards such as OMOP.

How we protect data

  1. Is this plain-English summary of the tiers an accurate reflection of the current pseudonymisation model? While the s.251 application is under consideration, should these be described as proposed arrangements rather than current practice?
  2. Should the finalised tier diagram from the pseudonymisation model replace the draft diagram above?
  3. Should the finalised high-level data flow diagram from the s.251 application replace the draft above? It shows the treating providers, the NHS Proton Portal, the Registry boundary, linkage partners and approved projects.
  4. What can we say about Data Security and Protection Toolkit status, for The Christie and for the trusted research environment's operator?

Information for patients

  1. Can we use a photograph of a proton treatment room? A candidate image should be requested from The Christie's communications team. It must show no patients or staff, with written permission to reuse it on this site.
  2. How should we describe what happens when someone opts out or objects? The current proposal excludes people who have opted out or objected from research projects, while asking the Confidentiality Advisory Group to let the Registry's own functions, such as checking fairness of access, include everyone. The wording here must match what is finally supported. Should this page also say that patients can record an objection to research with their treating hospital, and that the Registry honours it?
  3. Which legal-basis wording should appear here? It should be a plain-English version of the wording agreed for the About page and the privacy notice.

Information for researchers

  1. Which documents should be offered for download, and are they ready? Candidates are the data access application form, a data access agreement template (whose parties depend on the controller decision) and a data dictionary generated from the data items catalogue.
  2. What should we say about timelines and costs? For example: how often DMAC meets, typical time from application to decision, and whether access is charged on a cost-recovery basis.

Publications and reports

  1. Are there existing publications or reports to list here, for example earlier analyses of the cohorts now held in the Registry? If not, should the page say when the Registry's first annual report is planned?

Accessibility statement

  1. What did accessibility testing find? List any known issues, or state that none were found. This section can only be completed after automated (axe) and manual keyboard and screen-reader testing.
  2. Can we state that the website is fully compliant with the Web Content Accessibility Guidelines version 2.2 AA standard? Only claim this once testing supports it.
  3. On what dates was this statement prepared and the website last tested?

Privacy notice

  1. How should the controller and operator roles be described? This depends on the controller decision noted on the About page. The Christie operates the Registry in every option under consideration.
  2. How should the categories of data be summarised (identifiers, demographics, diagnosis, treatment and outcomes) together with the Registry's purposes? This should match the About page and the data catalogue.
  3. What is the agreed wording for the Registry's lawful basis under UK GDPR (Article 6 and Article 9 conditions) and its position under the common law duty of confidentiality, including the current status of the s.251 application?
  4. How should sharing be described? This covers approved projects (anonymised results by default, pseudonymised records by exception), linkage with other national registries, contact with patients through their treating hospital, and confirmation that data is not sold.
  5. What is the retention statement? The current drafts say records are kept for the life of the Registry, because the effects of treatment are lifelong, with arrangements for anonymisation or destruction if the Registry closes.
  6. How should rights be set out? This covers rights under UK GDPR, how the national data opt-out and Registry-level objections are applied, and how to complain, including to the Information Commissioner's Office.
  7. How long are emails to the Registry's mailbox kept, and who can read them?