Global Patient Partnership Director, Hematology

08 Feb 2021
28 Feb 2021
Full Time
Contract Type
Experience Level
Experienced (non-manager)
Purpose of the role
  • The Global Patient Partnership Director (PPD) assumes the strategic and operational lead for non-malignant hematology Paroxysmal nocturnal hemoglobinuria (PNH), Sickle cell disease (SCD) and Atypical hemolytic uremic syndrome (aHUS) specific patient-related matters requiring input along the medicines lifecycle (from entering the Life Cycle Investment Point (PivGo) to Loss of Exclusivity during the Integrated Development and Commercialization Planning process.
  • The PPD acts as the primary point of contact for PNH, aHUS, SCD patient communities across the organization
  • The PPD implements the inclusion of the patient perspective in alignment with Lifecycle Team (LCT), iSquads, and other core strategic teams and provides strategic guidance and frameworks to work with the global patient community (i.e., patients, caregivers and families, patient organisations (POs) including social media communities, online influencers and other associated groups) in the designated disease areas
  • The PPD  manages collaboration with selected global POs and supports the affiliates in their local engagements with the patient community
  • The PPD collaborates cross-functionally and implements PHC efforts, anticipating the change that are impacting patients and outcomes and shaping accordingly PHC and specific disease strategies

Main Responsibilities

Patient Engagement and Partnership with Communities
  • Ensures the integration of relevant PNH, SCD, and aHUS patient community goals into the disease area-specific integrated LCT, and iSquad strategies and programs and gives strategic guidance and selected support to affiliate teams in their execution of global programs
  • Implements PNH, SCD, and aHUS patient group councils with global PO leaders with the purpose of providing input into strategic decisions and touchpoints
  • Engages PNH, SCD, and aHUS Roche cross-functional leaders into patient community collaborations and ensures that the perspectives of the patient communities are heard by Roche leaders
  • Works towards Roche being recognised as a trusted partner for the PNH, SCD, and aHUS-relevant communities
  • Implements communication to and with the patient community including development of patient-friendly information on specific PNH, SCD and aHUS, study results, development program, and crisis management in collaboration with other functions
  • Leads patient community landscape analysis, patient stakeholder/community mapping, and competitor analysis on patient community strategies (establishment of Patient Council, identification of patient community needs, co-creation of patient journey with the community, etc.)
  • Develops and supports strategic PNH, SCD, and aHUS specific community capacity-building programs to enhance the patient communities' ability to advocate for their rights and be respected as an important stakeholder in relevant aspects of health systems and care
  • In line with the disease area strategies, ensures support of relevant strategic PO programs through sponsorship and grant agreements and drives the co-creation of programs on global level
  • Develops and implements PNH, SCD and aHUS-specific communication plan for external and internal platforms (e.g., patients in clinical trials, information packages, trial updates, communication of trial results) for use of iMPs
  • Ensures alignment and coordination of Global Patient Partnership Crovalimab efforts across Hematology, Neuroscience and I2O indications.

Insights and Evidence Generation
  • Creates effective/innovative solutions to generate patient insights and leads advisory boards or consultation meetings with patient stakeholders to bring the patient perspectives into the PNH, SCD, and aHUS programs
  • Contributes to market research activities targeting patient stakeholders
  • Drives and supports initiatives to bring the patient perspectives into data generation activities, including clinical trials and Real World Evidence (RWE)
  • Supports initiatives to improve the patient experience in data generation activities and collaborates with the patient communities to engage patients in Roche trials
  • Fosters Roche's support in PRO initiatives of patient communities.


Patient empowerment
  • In line with PNH, SCD, and aHUS strategies, drives and contributes to projects that support patient care pathway including education, sharing of information, disease and treatment management, by including the patient perspective and co-creation of activities
  • Drives disease area-related community awareness programs and develops disease-specific patient enabling and education tools
  • Drives or contributes to the development of patient support programmes and digital health solutions, ideally in co-creation with patient organisations
  • Leads or supports the co-creation of strategic access to novel therapies and improved care initiatives with POs
  • Creates patient relevant symposia and awareness session at patient congresses and events and executes PNH, SCD, and aHUS-specific social media strategies targeted at the patient community.

PHC Patient Partnership Strategy
  • Develops PNH, SCD, and aHUS-related community relevant PHC strategies as an integral part of the PP strategies, ensuring collaboration on patient insights generation, patient engagement in drug development, patient empowerment, patient engagement in policy and access.
  • Identifies strategic partnership opportunities on access to new types of data and datasets led by PNH, SCD, and aHUS related patient organisations that are critical for implementation of the respective PHC strategy
  • Collaborates with the patient communities in shaping the role of patients in shared decision-making and input into clinical decision support/patient-centric solutions and relevant PHC strategies.

Cross Functional Collaboration
  • Single point of contact for PNH, SCD, aHUS and other global patient communities related to disease areas (i.e., patients, caregivers and families, patient groups and social media communities, online influencers and other associated groups)
  • The PPD maintains oversight and provides direction and guidance for all global  patient partnership-related engagements from other internal functions (e.g., Patient Partnership Clinical Trials Director, other PD/GPS functions, affiliates, etc.)
  • Represents the patient partnership in the cross-functional disease area teams in order to align with the overarching stakeholder/disease area strategies
  • Collaborates with the Access and Policy teams to get the patient perspectives into Roche access and policy shaping activities
  • Brings patient community expertise to support Regulatory, Drug Safety, Health Economics and Health Policy , access and Commercial strategy and documents to ensure that the patient perspective is embedded across the value chain

Collaboration with Affiliates
  • Closely collaborates with affiliates to co-develop the patient partnership strategy and communicates regularly with affiliates to ensure that their needs are met
  • Provides guidance and support to affiliates in PNH, SCD, and aHUS-specific patient engagement/partnership planning and execution

  • Is responsible for acting in line with legal, regulatory and company standards and codes of practice (such as Roche Code of Conduct and any other Roche directives and guidelines) and including all local country policies related to HCP and Patient Community engagement
  • Promotes and informs the PNH, SCD and aHUS teams about patient partnership related compliance policies
  • Completes all required training modules as a priority

Professional Background
  • University level degree is required (business, communication or life sciences), Master of Science Degree, PhD or MBA is preferred
  • Strong experience in Patient Partnership, ideally in Hematology and/or rare diseases  
  • Background with solid track record in professional patient and/or NGO interactions.
  • Experience in integrating the patient perspective into R&D programmes

  • Ability to build deep and meaningful relationships with patient communities 
  • Emotional intelligence and ability to see all issues from a patient/patient community and a Roche perspective
  • Proven ability to operate successfully in a cross-functional, often virtual matrix environment with shared accountability and responsibilities
  • Flexibility and agility to change DA/TA according to business needs
  • Ability to learn and work across multiple cultures and countries
  • Functional competencies and Roche Core Competencies, including but not limited to, organization, prioritization and planning skills, negotiation skills, communication & presentation skills
  • High ethical standards and ability to view the world from the patients perspective
  • All internal and external candidates are expected to demonstrate Roche Values and Leadership commitments.

Experience, Skills, Knowledge
  • Relevant knowledge of the RD including PHC
  • Professional experience in interactions with patient groups, patient communities, preferably in hematology and/or rare diseases
  • Relevant knowledge of the drug development process and regulatory requirements and trends for drug approval, clinical trials and medical communication and commercialization processes in the pharmaceutical, biotechnology or related highly regulated industry
  • Understanding of the international patient advocacy environment especially in their involvement into R&D and HTA
  • In-depth understanding and consistent adherence to compliance and transparency policies in relation to working with third parties, particularly POs is preferred
  • Strong analytical skills: demonstrable ability to use quantitative and qualitative information to identify opportunities or risks and help inform and shape strategies and plans
  • Excellent communicator in written and public speaking capacities; experience in the development and execution of global communication plans
  • Fluency in written and spoken English

  • This is a global role based in one of our Roche affiliate offices, and international travel is required
  • The Patient Partnership Director is a member of the specific cross-functional teams and the International Patient Partnership (iPP) community