Guiding Principles & Transparency

Our Definition of a Heart Patient Organisation

In the context of Global Heart Hub, we view patient organisations as any group of individuals who have come together to highlight the needs of heart patients and their carers, and to advocate for equity and equality of access to internationally-recognised best practice in detection, diagnosis, treatment and care.

A defining criteria is that leadership and membership of the patient group is predominantly comprised of those living with a cardiovascular condition, carers or patient advocates.

GHH is an umbrella patient organisation founded by patients, for patients.

At the core of our mission is the representation of heart patient organisations, which we achieve through robust governance and a transparent approach, ensuring we uphold the rights and interests of individuals affected by cardiovascular diseases.

Our Governance and Transparency

Transparency and governance are crucial for non-profits, ensuring that they operate ethically, efficiently, and in the best interest of the public they serve. Strong governance helps maintain trust with funders, beneficiaries, and the public, while transparency ensures accountability and allows for scrutiny of how resources are used.

Governance refers to the system of rules, practices, and processes by which a non-profit is directed and controlled. Good governance ensures that the charity is managed in a way that maximizes its impact and meets its legal and ethical obligations.

Constitution

In accordance with the Companies Act 2014, Global Heart Hub (GHH) was incorporated in Ireland in 2019 as a non-profit organisation. The main objects for which GHH was established are:

(i) to provide a voice for those affected by cardiovascular disease by creating a global alliance of cardiovascular patient organisations;

(ii) to advocate for the needs of cardiovascular disease patients and their carers across the world;

(iii) the promotion and protection of the physical and mental health of individuals at risk of or affected by cardiovascular diseases anywhere in the world through the provision of support, education, advocacy, training and/or practical advice;

(iv) the advancement of the patient and carer education in all areas relating to cardiovascular diseases;

The complete constitution is available here

Key Components of Governance of GHH:

Board of Directors: GHH is governed by a board of directors who oversee the charity’s strategy, fiscal management, and adherence to its mission. The board is made of persons with relevant competences and capabilities in organisational management. A strict identification of any conflict of interest takes place at the beginning of every Board meeting to ensure full transparency. As per Global Heart Hub constitution, a minimum of 50% of the members of the board of Directors must be patients or carers, ensuring the patient perspective is represented at board level. The board meets bi-monthly online or in person where a review takes place of all operations, finances, and strategy. All details on the Board of Directors can be found here
Clinical and Specialist Advisory Panel (CSAP): GHH CSAP provides guidance and recommendations on practices, policies, and protocols. The panel consist of leading global experts in the field of cardiovascular health who collaborate to improve patient care, discuss emerging treatments, and advise on the clinical aspects of healthcare programs or research initiatives. All details on the CSAP can be found here
Leadership and Accountability: The executive director implements the organisation’s strategy and is accountable to the board.
Policies and Procedures: Clear policies and internal controls help to ensure decisions are made transparently, with oversight of financial and operational aspects.

Key Components of Transparency of GHH:

At Global Heart Hub (GHH), transparency is a cornerstone of our operations. We are committed to being open about our activities, financial status, and the ways in which we utilise funds. This commitment not only fosters trust among our stakeholders but also encourages their active participation in our mission to improve heart health.

GHH is recognized as a Charitable Organization under Irish Law with the tax registration number: 3659895FH and charity number 20204976

Our EU Transparency Register Number is 919657145807-88

Financial Transparency: GHH financial statements are externally audited annually to verify the accuracy of financial reporting and ensure compliance with legal standards. The accounts are prepared in accordance with the Companies Act 2014 and filed with the CRO, Companies Registration Office. A breakdown of the latest financial statement can be found here
Annual Reports: Each year, GHH prepares a comprehensive annual report that is made available on our website and uploaded to the Irish Charity Regulator’s website for public review at www.charitiesregulator.ie. This report provides a thorough summary of our activities and achievements, along with a financial overview, demonstrating our commitment to accountability and transparency in all our operations. Our Annual Reports can be found here
Use of Funds: Global Heart Hub receives both unrestricted funding and dedicated financial support for specific causes, enabling us to continue our vital work representing and defending the rights and interests of individuals living with or affected by cardiovascular diseases. All funding received is governed by individual contracts specifying the use of the funds and all reporting requirements are adhered to. As a patient organisation that prioritises health, we do not accept any funding from companies producing products deemed harmful to health. GHH is committed to securing multi-industry support. A complete list of all our current funding partners can be found here.

EU Regulations on Charitable Donations:

EU Anti-Money Laundering (AML) Directives: GHH complies with the EU’s Anti-Money Laundering Directive to prevent misuse of funds.

Gender Equality Plan

At Global Heart Hub, we believe in equitable access to healthcare and support, and that starts within our own organisation. Our Gender Equality Plan sets out how we are actively working to promote gender equality in all aspects of our operations. This includes ensuring fair representation, equal opportunities, and a supportive culture for all our staff and volunteers. We invite you to explore the plan and join us in building a more gender-equal future for patient care.

GHH Gender Equality Policy

Code of Conduct on working with industry

Our work is largely funded through grants from industry, which are either unrestricted or by way of sponsorship of specific activity initiated by Global Heart Hub in support of our mission. We believe that ethical and transparent collaboration between industry and patient organisations contributes to valuable and important healthcare discussions, which ultimately lead to improved outcomes for patients. We undertake to, at all times, disclose the names of all our industry funders; seek support from multiple funders (to avoid real or perceived exclusive relationships); and only work with those companies who abide by our code of conduct on working with industry.

Code of Conduct with Industry

Policy for involvement in EU projects

European Union projects play a vital role in advancing healthcare innovation and patient advocacy. Our ‘Policy for Involvement in EU Projects’ details our strategic approach to engaging with these important initiatives. It ensures that our participation contributes effectively to our organisational goals and benefits the patient community.