Leadership & governance
How Hope4PKD separates authority.
Governance determines who can access medical information, approve patient stories and authorise the use of donated money.
How decisions are made
No single person moves a case alone.
Eligibility, medical verification and financial approval are three separate decisions taken by different roles. Staff can access only the part of a case their role and assignment require.
Sensitive actions create a permanent record of who acted, why and when. The record allows later review, including by the patient the decision concerns.
Standing rules
Rules that apply to every decision.
These rules apply now and will constrain the service when it is built.
Separation of duties
Medical and programme roles review different parts of a case, and neither approves the funding that follows.
Declared interests
Leaders, staff, reviewers and relevant volunteers declare actual, potential and perceived conflicts on appointment and whenever circumstances change.
Recusal
A conflicted person does not access, influence or approve the affected decision unless a documented lawful exception applies.
Consent before publication
Identity level, story approval and consent version are recorded for every published case, and public pages read from an approved projection rather than case records.
Financial separation
Donations, fees, allocations, disbursements and refunds are recorded separately, never as one number.
Policy gates
Donations, refunds, campaign surplus and public reporting stay switched off until their approved policies exist.
What is still pending
Publish names only after consent and approval.
Photographs and roles exist internally. They stay there until the people in them have approved how they are described publicly.
Leadership profiles are under organisational review
Leadership pages will name only confirmed roles and use approved biographies. Registration details, governance documents, declared conflicts and approved profiles will appear here when confirmed.
Read the conflict of interest policy