Patient Advocacy & Public Affairs Lead - Rare Disease

Purpose

To lead the planning, management and delivery of Chiesi’s UK external policy and advocacy programme for our rare disease portfolio within the UK and Ireland rare disease Business Unit. The role will primarily focus on advocacy, public affairs and engagement with patient groups, key opinion leaders and supporting the development of clinical and policy advocates. The role will require a knowledge of the healthcare system in UK and routes for access to medicines, as well as timely horizon scanning of an increasingly complex and challenging external healthcare policy environment. 

Essential elements of this role will be to use insights to shape and influence strategy and tactics, identify relevant policy makers, patient organisations and influencers and establish positive relationships. The goal will be to shape and influence policy direction within the UK healthcare system to improve patient access to medicines for rare and ultra-rare diseases. 

The role will be responsible for developing the public affairs and advocacy programme, supporting materials, managing external suppliers and working cross functionally. A critical success factor will be establishing strong relationships with relevant teams in UK affiliate and Global to ensure that up-to-date intelligence is shared, and the role adds measurable value to the business. 

The role will report directly to the Head of Medical Affairs of Rare Diseases and a dotted line to the Senior Director Public Affairs and Communication. The role will also work closely with Chiesi Dublin office, market access and field-based colleagues to ensure barriers to access at all levels of the system are fully understood. This will require regular reporting of the impact of the programme to both Global and UK senior management teams.

The role will require UK and international travel. 

Profile

The job holder must have insight into the challenges associated with patient access to medicines for rare diseases. The role will require excellent knowledge of current healthcare policy, policy development processes, access routes for medicines and healthcare system knowledge across the UK. 

The job holder will have a proven track record of establishing external collaborative relationships and/or delivery of policy-based initiatives that deliver value for both the customer and the business. Additionally, the job holder must be able to develop strong internal and external partnerships to gain buy-in and support for proposals.

To succeed in this role, excellent communication and influencing skills combined with professional gravitas will be required, to engage effectively and network with senior policy leads as well as Chiesi senior leadership teams. 

The individual should also have detailed knowledge of the ABPI Code of Practice and be able to critique work and/or proposals to ensure compliance with the Code and foresee/mitigate potential risks to plans.

Main Responsibilities

Overarching:
•    Develop, manage, and implement the UK rare disease advocacy and public affairs programme
•    Support Head of Medical Affairs Rare Diseases with budget management for programme
•    Work cross-functionally within UK affiliate and with global teams
•    Provide accurate and timely reports of progress of the plan 
•    Provide accurate and timely updates of policy insights and associated risks/issues for Chiesi 
•    Effective supplier management
•    Active participation in Global projects

Stakeholder management:
•    Develop trust and build meaningful relationships with key policy influencers and policy decision-makers.
•    Identify and develop strong relationships, working alongside medical team colleagues, with critical patient advocacy stakeholders and professional societies to advance common interests relating to Chiesi GRD’s disease areas.
•    Act as the company representative for patient advocacy organizations, maintain and enhance relationships with key patient advocacy partners,
•    Mobilize PAGs and key KOLs/Scientific Societies/political networks in support of our challenges and opportunities.
•    Develop and implement projects and activities (in line with the Global and EU Patient Advocacy plan) with patient advocacy groups and other related stakeholders to improve the standard of care in the UK, educate patient groups and to support market access, pricing & reimbursement and Government Affairs efforts.
•    Educate PAGs in HTA contributions to support patients' access to treatment.
•    Connect relevant Chiesi personnel with senior NHS customers to enable swift decision making on key business issues and to develop longer term opportunities for dialogue at an executive level.

Healthcare policy management:
•    Share timely insights with appropriate brand team members to inform current and future brand plans.
•    Monitor legislative developments and emerging trends related to rare diseases, and develop strategic action plans aligned with business objectives.

Ways of working:
•    Create collaborative working relationships with relevant Chiesi teams to ensure effective communication of policy insights, risks and opportunities to support the harmonisation of business strategies and effective execution of commercial plans 
•    Develop a strong internal network with Global teams
•    Contribute to development of strategic recommendations and tactical plans for implementation on a local level including stakeholder maps and engagement plans
•    Work in close contact with the Europe & EM Patient Advocacy Sr.Manager and with the Public Affairs team to support company’s success and take patient and patient advocate needs into account as business decisions are made.
•    Proactively manage the UK rare disease advocacy work programme with effective working relationships with consultancies and suppliers of services
•    Establish, track and report on project plans, ensuring regular and timely progress updates are provided to senior management and cross functional teams
•    Control budget spend, tracking expenditure and measuring the return on investment
•    Ensure strict compliance of all recommended activity to both company standards (SOPs) and the ABPI Code of Practice
•    Ensure Chiesi company values underpin all ways of working and delivery of the public affairs programmes
•    Respond and deliver to ad hoc work requests from the Head of Rare Diseases.
•    Comply with the Company Code of Ethics.

Skills and Experience

•    Excellent knowledge of the UK healthcare system and relationships with external stakeholders, with a specific focus on patient advocacy.
•    Ability to adapt insights from Chiesi Dublin colleagues to inform the advocacy and policy influence plan for Ireland
•    Knowledge of NHS decision-making processes for approval and funding of medicines for rare diseases
•    Able to navigate in complex environments, creating strong networks of trust & support towards various stakeholders, internally & externally.
•    Mandatory previous professional experience in Rare Diseases, with a track record of key initiatives carried out with the rare disease community (PAGs, KOLs).
•    Detailed knowledge of the main policy challenges associated with medicines 
•    Experience of managing budgets for projects
•    Experience of undertaking desk-based research and collating findings into a written report

Values and Behaviours

•    Drive and enthusiasm to be self-motivated to perform accurate and detailed work and deliver work to fixed deadlines. 
•    When representing Chiesi to stakeholders, communicate and behave with professionalism and gravitas 
•    Personal effectiveness; logical, quick and flexible in the appraisal of situations and policy issues
•    Communication skills; strong communication and interpersonal skills and be able and confident to represent Chiesi with senior policy makers and their teams 
•    Work in teams; the ability to work well in a team environment but also to work under own initiative.  Be able to take direction, deliver outputs on time and report progress on work with others
•    Drive for Excellence; a concern for working to high standards, accuracy and quality and a willingness to learn new skills, competencies and behaviours. 
•    Innovative approach: the desire to identify and recommend potential process improvements