Organisational Governance and Accountability
Rare Disease Watch recognises that individuals involved in its activities may have professional, financial, commercial or personal interests outside the organisation. These relationships can bring valuable expertise, experience and opportunities, particularly in a field involving patients, researchers, healthcare professionals, pharmaceutical companies and other organisations.
They can also create circumstances in which an individual's judgement or independence may be affected, or reasonably perceived to be affected.
This policy establishes how conflicts of interest are identified, disclosed, assessed and managed. Its purpose is to support transparent decision-making, protect editorial independence and maintain confidence in the organisation's activities.
The policy forms part of the Rare Disease Watch Governance Framework.
The purpose of this policy is to ensure that decisions and recommendations made on behalf of Rare Disease Watch are based on the organisation's objectives, appropriate evidence and professional judgement rather than undisclosed personal or external interests.
Rare Disease Watch recognises that conflicts of interest cannot always be avoided. Individuals working in rare diseases may have several overlapping roles, including employment, research, patient advocacy, consultancy, commercial partnerships and membership of other advisory bodies.
The existence of a conflict does not automatically indicate inappropriate behaviour. What matters is that relevant interests are disclosed and managed appropriately.
This policy applies to individuals whose responsibilities or activities may influence Rare Disease Watch's decisions, publications, partnerships or use of resources.
This includes:
The extent of an individual's obligations will depend on their role, responsibilities and applicable legal requirements.
A conflict of interest arises when an individual's personal, financial, professional or other interests could interfere with their responsibilities to Rare Disease Watch.
Conflicts may be actual, potential or perceived.
Actual conflict: A situation in which an individual's interests are directly competing with their responsibilities to the organisation.
Potential conflict: A situation in which an individual's interests could create a conflict in the future.
Perceived conflict: A situation in which a reasonable person might question an individual's independence, even where no improper influence has occurred.
Conflicts may be financial or non-financial. They may arise through employment, professional relationships, organisational affiliations, personal relationships or other commitments.
Conflicts may arise in a range of circumstances, including:
These examples are not exhaustive. Individuals are expected to disclose relevant interests even where a particular situation is not specifically described in this policy.
Individuals covered by this policy must disclose relevant conflicts when taking up a role with Rare Disease Watch and whenever their circumstances materially change.
A conflict relating to a particular meeting, recommendation, publication, partnership or decision must be declared before the individual participates in that activity.
Disclosures should provide sufficient information to understand the nature of the interest and its possible effect on the individual's responsibilities.
Where an individual is uncertain whether an interest should be disclosed, they should seek guidance from an appropriately authorised representative of Rare Disease Watch.
Disclosures will be handled proportionately and with appropriate regard to confidentiality and data protection.
Rare Disease Watch operates as part of a UK-registered limited company.
The statutory director or directors of the operating company must comply with their duties under the Companies Act 2006 and the company's articles of association.
These duties include avoiding conflicts of interest where required, declaring interests in proposed transactions or arrangements, and declaring interests in existing transactions or arrangements where applicable.
The management and authorisation of directors' conflicts must follow the requirements of company law and the operating company's articles of association.
Where the company has a sole director, additional care must be taken to identify and document conflicts that affect that director's decisions.
Independent professional advice may be sought where appropriate. Such advice does not replace any statutory approval or authorisation required by law.
This policy does not override the legal duties of company directors.
Advisory Board members may hold professional positions or affiliations with organisations involved in rare disease research, healthcare, pharmaceuticals, biotechnology, patient advocacy, funding or related activities.
These relationships may be valuable to Rare Disease Watch, but relevant interests must be disclosed.
Advisory Board members must not use their position to obtain inappropriate commercial advantage, preferential editorial treatment or unauthorised access to confidential information.
Where a conflict arises, the organisation may restrict participation in particular discussions, recommendations or activities.
An Advisory Board member may be asked to withdraw from a discussion or recommendation where their involvement could compromise independence or create an unacceptable perception of bias.
An annual contribution associated with Advisory Board membership does not confer additional authority, preferential treatment or exemption from conflict of interest requirements.
Further responsibilities are described in the Advisory Board Terms of Reference.
Rare Disease Watch is committed to publishing accurate, balanced and evidence-informed information.
Authors, editorial advisers, reviewers and contributors must disclose interests that could influence, or reasonably appear to influence, the content of a publication.
Relevant interests may include:
Disclosure does not automatically prevent publication.
The editorial team must consider whether disclosure, independent review, reassignment or another measure is appropriate.
Editorial decisions must remain independent of commercial pressure and comply with the Editorial Standards and Contributor & Author Guidelines.
Rare Disease Watch may collaborate with pharmaceutical companies, biotechnology organisations, research institutions, healthcare providers, patient organisations, charities and other relevant partners.
Individuals involved in selecting, negotiating or approving these relationships must disclose any relevant interests.
A commercial relationship must not be used to obtain inappropriate influence over editorial decisions, patient participation arrangements or access to confidential information.
Where an individual has a financial or professional interest in a proposed partnership, the interest must be assessed before the individual participates in relevant recommendations or decisions.
Significant conflicts may require independent assessment or the involvement of another appropriately authorised person.
The Partnership & Sponsorship Policy provides further requirements.
Rare Disease Watch recognises that patients, carers and advocates may have relationships with pharmaceutical companies, research institutions, charities or other organisations.
Such relationships do not automatically prevent participation in Rare Disease Watch activities.
Where an individual is contributing to a consultation, advisory activity, publication or decision-making process, relevant interests should be disclosed when they could affect the activity or how the contribution is perceived.
Disclosure requirements should be proportionate and should not unnecessarily discourage patient or community participation.
Individuals must not be excluded solely because they have received legitimate compensation for previous patient involvement activities.
Related document:
Patient Involvement & Compensation Principles
When a conflict is disclosed, Rare Disease Watch will consider its nature, significance and potential effect on the activity or decision concerned.
The assessment should be undertaken by an appropriately authorised person who does not have an unmanaged conflict in the matter.
Possible measures include:
The response should be proportionate to the circumstances.
Where a conflict concerns the statutory director or directors, the applicable company law and articles of association take precedence over internal procedures.
Rare Disease Watch will maintain an internal register of relevant declared interests for its statutory leadership and Advisory Board members.
The register should record:
The register should be updated when relevant circumstances change.
Access to the full register will be limited to appropriately authorised individuals.
Information may be disclosed publicly where required by law or where proportionate transparency is appropriate.
Personal information contained in the register will be handled in accordance with the Privacy Policy.
Individuals acting on behalf of Rare Disease Watch must not accept gifts, hospitality or other benefits that could improperly influence their judgement or create a reasonable perception of inappropriate influence.
Modest and customary professional hospitality may be acceptable where it is proportionate, transparent and does not affect organisational decisions.
Significant gifts, benefits or hospitality connected to a current or prospective partner must be disclosed.
Rare Disease Watch may require an individual to decline or return a benefit where acceptance could compromise independence or create an unacceptable conflict.
Individuals must not use confidential information obtained through their role with Rare Disease Watch for unauthorised personal, professional or commercial advantage.
This includes non-public organisational information, partnership discussions, financial information, member details and other confidential material.
Confidential information must not be disclosed to external organisations without appropriate authorisation and a lawful basis where personal data is involved.
Advisory Board membership, employment or voluntary involvement does not provide unrestricted access to member profiles or personal health information.
Related documents:
Failure to disclose a relevant conflict may constitute a breach of this policy.
Rare Disease Watch will consider the seriousness of the omission, whether it was deliberate, the potential consequences and any steps taken to correct the situation.
Depending on the circumstances, action may include requesting clarification, reviewing an affected decision, restricting participation, ending an appointment or taking other appropriate measures.
Where a statutory director's legal duties may have been breached, the matter must be considered in accordance with applicable company law.
Concerns about undisclosed conflicts may be raised under the Complaints & Concerns Policy.
Individuals who become aware of a possible conflict of interest should raise the matter through an appropriate organisational reporting channel.
Concerns should be considered fairly and with appropriate attention to confidentiality.
Where a concern involves an individual who would ordinarily assess it, an alternative arrangement should be considered to avoid an unmanaged conflict.
Individuals raising concerns in good faith should not be subjected to retaliation for doing so.
Knowingly false or malicious allegations may be addressed under the organisation's conduct procedures.
Responsibility for maintaining this policy rests with the operating company's director or directors.
The policy should be reconsidered when significant changes occur in the organisation's activities, governance structure, commercial relationships or applicable legal requirements.
Amendments require approval by the appropriately authorised director or directors.
The policy operates alongside the wider Rare Disease Watch governance arrangements and supporting procedures.
The following documents provide additional information about responsibilities, ethical standards and organisational decision-making.
Organisational Governance
Editorial and Contributor Standards
Partnerships and Participation
Information and Conduct
Rare Disease Watch
All Rights Reserved. Rare Disease Watch©. Part of Honnao Ltd, Registered in England and Wales, Company number: 12345498.
Trading Address: Highstone House, 165 High Street, Barnet, Herts. EN5 5SU, UK.
