Excom Membership

The ENP is an informal gathering of local partners who are interested in improving patient involvement in medicines research and development. The ENP and its educational material does not represent the interest of any specific member of the ENP, or a specific therapeutic domain, nor product, and acts solely in the interest of patients.

The ENP is represented by a non-profit organisation (EUPATI BELGIUM VZW), which is a legal entity. The ENP is non-financially supported by EUPATI – the European Patients’ Academy.

Membership

Membership of the ENP remains open to all patients, patient advocates, patient organisations, academics, institutions, university hospitals, healthcare associations, industry representatives, companies, government officials, regulatory bodies and medical journalists. The ENP welcomes both individuals and organisations as members. The ENP welcomes members from all regions of Belgium.

A request to become a member of the ENP should be sent to the ENP Committee at info@eupati.be . New members will be asked to review this ENP Statute and to sign up to its provisions.

Individuals who are members will have the right to attend and vote at Annual Meetings; participate in ENP activities; speak about EUPATI at public events; make submissions to the ENP Committee. There is no membership fee. Each individual member has one vote. Members give consent for their personal contact details to be added to the ENP mailing list and shared with other members.

Members should have an interest in patient involvement in medicines development and must subscribe to the EUPATI vision for patients, academia and industry to work together in partnership to improve patient involvement in medicines research and development. Membership of the ENP does not preclude members from joining any other group or association.

The ENP operates in accordance with the EUPATI Ethical Framework. Members who are deemed by the ENP Committee (by consensus vote) to have brought the reputation of the ENP into disrepute or to have acted against the EUPATI vision will be asked to leave the ENP. Equally, a member may resign from the ENP if they no longer feel the ENP aligns with their personal or professional goals by writing to info@eupati.be.

ENP objectives

The ENP has set 7 objectives to:

  1. empower patients by broadly promoting patient education and involvement;
  2. organise educational training and events;
  3. raise awareness about the EUPATI project and its results at a national level;
  4. disseminate EUPATI educational and training material to patients and to the general public;
  5. grow the EUPATI network nationally and stimulate patients to get involved in EUPATI activities;
  6. foster national debate on patient involvement in medicines research and development;
  7. establish the National Platform as a sustainable partnership, and a key interlocutor for government when developing relevant health research legislation, policy and practice.

ENP Transitional Governance

The ENP has established an Executive Committee (herein ‘the Committee’) of 6 members. A minimum of 2 positions on the Committee will be reserved for patient representitives, 2 for academia and 2 for industry. It is suggested that Committees adopt a 3+2+2 composition or a 2+2+2 composition giving the patient chair a casting vote. In selecting their Committee, an ENP should be mindful of the tripartite partnership which EUPATI embraces. The Committee can revise the composition of the Committee at any time, based on a consensus vote, providing that there is always a majority of positions reserved for patient and academic representatives. A maximum of 10 members should sit on the Committee at any one time.

All positions are held in a voluntary capacity. In line with the ENP Rules of Reimbursement, Committee members may be reimbursed for travel and accommodation expenses, but not for time or other expenses. Committee members must remember that they do not sit on the committee as representatives of their particular organisation, institution or company or as representatives of their disease, research or drug area. Committee members must represent their interest group with independence, objectivity and commitment.

The Functions of the Committee will be:

  • To move the ENP towards the realisation of its strategic objectives and plan, that will be defined by the Executive Committee in close collaboration with the Advisory Committee;
  • To maintain and grow a diverse, active and united ENP membership;
  • To make programmatic and logistical preparations for ENP events;
  • To create Sub-Committees to engage in research, explore policy options and recommend action plans;
  • To sign partnership agreements on behalf of the ENP;
  • To develop or sign policy statements and other documents on behalf of the ENP;
  • To represent the views of the ENP with sponsors, funders, media and other key stakeholders;
  • To set the agenda for the Annual Meeting;
  • To monitor and evaluate ENP progress against work plans and budgets;
  • To ensure members comply with the provisions of this Statute.

The ENP is required to appoint to the Executive Committee a minimum of a Chair, a Treasurer, a Communications Officer, a Vice-Chair, and a Secretary. The Chair must be a patient representative. The Treasurer cannot be an industry representative. Other responsibilities allocated to members might include:

  • network management [ENP queries, new members, contact database, mailing lists]
  • event management [logistics, catering, travel, accommodation]
  • strategic planning [work plans, implementation, monitoring and evaluation]
  • government relations, as well as regulatory body and healthcare professionals

ENP Chair

The functions of the Chair will be:

  • To represent and lead the ENP;
  • To represent a strong patient perspective on the direction of the ENP;
  • To convene ENP meetings;
  • To supervise the work of the ENP secretariat, including mailing lists, contact databases, knowledge management etc;
  • To sign partnership agreements and policy statements on behalf of the ENP;
  • To lead the preparation of a national dissemination plan to support the dissemination of EUPATI material and the strengthening of the national debate around patient engagement;
  • To monitor the ENP adherence to decisions taken and to prepare an annual report for the Annual meeting.
  • To act as the spokesperson for the ENP;

ENP Vice-Chair

It is recommended that the Committee also appoint a patient Vice-Chair to support the work of the core Committee members. Alternatively, the chair may opt to appoint a co-chair on an ad hoc basis when he/she is unable to fulfil the role. The functions of the Vice-Chair will be:

  • To replace the Chair when absent, performing the same functions as listed above.
  • To act as the spokesperson for the ENP;
  • To represent the ENP;
  • To represent a strong patient perspective on the direction of the ENP;

ENP Treasurer

The functions of the Treasurer will be:   

  • To act as the financial liaison point for the ENP Cash Pot in Brussels, held by EFGCP
  • To ensure ENP funds are managed in accordance with the EUPATI Rules of Reimbursement;
  • To manage the ENP expenditure in line with available funds and maintain a record;
  • To drive the identification and approval of new sources of funding for the ENP;
  • To prepare an annual budget for the Annual meeting.

ENP Communications Officers

The functions of the Communications Officer will be:      

  • To respond to public and media queries;
  • To publicise ENP activities and achievements;
  • To maintain and grow an ENP online presence (Twitter, facebook, LinkedIn, other) in coordination with the (Vice)-Chair;
  • To prepare a national communication plan to support dissemination of EUPATI material and the strengthening of the national debate around patient engagement.   

ENP Education Officers

The functions of the Education Officer will be:          

  • coordinate education activities
  • guarantee the quality and accuracy of the educational material
  • guarantee the independence of the provided material and activities
  • build partnerships with the various stakeholders, focussing on patient education

ENP Partnership Officers

The functions of the Partnership Officer will be:       

  • explore partnership opportunities
  • assist in fundraising  
  • assist in stakeholder mapping
  • build partnerships with the various stakeholders, focussing on patient education

  ENP Secretariat

The functions of the Secretariat will be:

  • To prepare the minute and actions from ENP Committee and general meetings;
  • To prepare correspondence for the Chair;
  • To ensure members sign the Statute.   

ENP Advisory Committee

The ENP has the option to establish a further Advisory Committee to support strategic planning, local fundraising and national dissemination. An ENP Advisory Committee could comprise of any number of patient, academic, industry representatives, healthcare professionals and or other relevant local partners, including government or regulatory bodies. The exact composition, function and term in office should be determined by the ENP Executive Committee by a consensus vote, but a majority of positions must be reserved for patient representatives. The Chair of the Executive Committee would also chair the Advisory Committee meetings. Members would optimally meet bi-annually. All positions would be held in a voluntary capacity.

The function of the Advisory Committee is to support the Executive Committee in setting the medium-long strategic priorities for the ENP. The Advisory Committee members should each have a duty to publicise the impact of EUPATI nationally and raise funds for ENP activities. Members should contribute a wealth of patient advocacy experience, a strong network of personal and professional contacts, extensive experience in public communications and fundraising. 

ENP Supporters

Besides members of the advisory committee, supporters can also become a member of the ENP. The supporters do not have an immediate active engagement to participate in activities of the ENP, but agree to disseminate EUPATI educational and training material to patients and to the general public. The contact details of the supporters will be kept in a registry and will be informed on a regular basis about the activities of the ENP.   

ENP Executive Committee Selection

Regular selection

ENP Executive Committee members will be proposed by the founding members at the December 22 2016 meeting of the ENP. Committee members appointed at this meeting will serve a term of one year, starting at the signature date of the ENP statute.

After February 2017, the ENP should determine a criteria for the election or selection of a new Executive Committee.

The election or selection of a new Committee will take place at the ENP Annual meeting. All candidates will be listed in alphabetical order. If two candidates from the same organisation, institution or company are elected or selected, only the candidate with the largest vote (or the first candidate selected) will go forward onto the Committee.

Selection to a vacant post

Should an Executive Committee member vacate their position before the end of the term, the Committee will invite expressions of interest from members, and the Committee will develop a criteria to determine how to elect or select from candidates. The Committee will make a decision on how to proceed based on a two-thirds majority vote, of which at least a majority must be patient and academic representative votes. No position should be left vacant for more than three months.

ENP Decision-making

Executive Committee meetings

The ENP Committee will ideally meet every quarter. Meetings will be called by the Chair of the Committee. In the absences of regular quarterly meetings the Chair must organise a meeting after receiving a written request from more than half of the Committee. Committee members can appoint a delegate to attend on their behalf, as long as a delegate is not appointed for more than half of the meetings which occur during a 12 month period. Persons not belonging to the Committee may attend meetings in an advisory or expert capacity, but will not be able to vote.

Final decisions about strategic objectives, work-planning and budget are taken by the ENP Committee and this responsibility cannot be delegated. The Committee may of course choose to consult with its members in advance of any decision. All Committee decisions must be taken once a quorum of Committee members are present. In order for a quorum to be reached, at least one representative from patients, academic and industry must be present at the start of the meeting, and of those present there must be a majority of patient or academic representatives. In the event of a hung vote, the Chair has the casting vote.

Executive Sub-Committees

In order to support Committee decision-making, the Committee may decide to appoint a number of members to an ENP Executive Sub-Committee. Sub-Committees might be tasked with researching a particular issue of thematic or geographic concern, or any other matter which the Committee deems suitable. Sub-Committees can make recommendations, but the final decision should be made by the Committee.

Annual meeting

The Chair and Treasurer will prepare a short, written annual report and budget for members, which will be circulated no later than 31st January of the following year. The ENP will host at least one Annual Meeting for members, ideally in February. Members will be notified of the date, time and place of the meeting at least four weeks beforehand. Minutes of the meeting will be taken by the ENP Secretariat and circulated to members within two weeks of the close of the meeting. The ENP annual report and budget will be approved by a majority of members present.

ENP Communication

ENP members will provide the ENP Secretariat with their personal contact details and members will inform the Secretary of any changes to these details. Members can contact the Committee by emailing info@eupati.be. The ENP Secretariat will keep members informed of ENP activities and development via quarterly communications.

In order to reach as many ENP member and member of the public, the ENP Executive Committee should ensure that communication takes a number of diverse forms, including emails, webpage updates, facebook posts, tweets, flyers, posters, webinars etc.

All ENP communications, graphics and branding must be aligned with EUPATI centrally and must follow the EUPATI corporate identity guidelines, also taking into account that the EUPATI trademark is registered by EPF.

ENP Policy statements and other documents

The Committee will, via its decision-making process detailed in section above, decide whether to develop or sign up to policy statements, papers and opinions and to consultation responses on behalf of the ENP.

Where an issue is particularly complex or sensitive to patients nationally, it is recommended that the ENP consult the opinion of all its members before publicising any document which might not be representative of the ENP’s position as a whole. Consultation should be conducted in writing, and members should be given a specified period of time to respond with any comment or objection.

All ENP members have the right to request to the Committee that an issue is considered or that a document is prepared on behalf of the ENP. Upon receiving such a request, the Committee will agree to proceed by consensus vote. Should more than half of the patient representatives of the ENP submit a petition to the Committee, the request must be executed in favour of the petitioners.

ENP Partnership agreements

The ENP Committee can enter into and sign a partnership agreement with a specific member or other local stakeholder on behalf of the ENP. The Committee will inform the ENP of the partnership agreement details via email. The agreement will describe the nature of the partnership, the duration of the partnership, and any contributions [either financial or in kind] attached to the partnership.

ENP Funds

The ENP is self-funding. The ENP raises funds from its members, government agencies and/or from external funders and sponsors. Any submission for funds should ideally be made on behalf of the ENP, but should the ENP be disqualified from accessing funds due to its lack of legal status, an ENP academic or patient group member can, with the agreement of the Committee, make a submission for funds on behalf of the ENP. Any funds raised on behalf of the ENP must be used for activities agreed by the ENP Committee and in line with the ENP objectives. The Treasurer is responsible for the financial management of the ENP.

Statute revisions

Any member can propose a revision to this document. Revisions will be considered by the Committee by consensus vote, and a decision communicated to members. Should more than half of the patient representatives of the ENP submit a written revision of the Statute to the Committee, this will be deemed carried and the revision will be implemented within 30 days. The current statutes can be found here.