Patient organisations play a crucial role in the three focal points: supporting patients and peers, focusing health policy on patients' needs, and collaborating with all stakeholders involved in research and development. However, involving patient communities in complex healthcare systems, regulatory frameworks and corporate research processes often proves to be challenging.
The Patvocates Network is both a patient-driven think tank and patient-focused network consultancy in the triangle of patient advocacy, health policy and social media, run by patient activists and expert patients with decades of experience in patient advocacy.
The unique knowledge and skills of the Patvocates Network extends to building bridges between various stakeholders in health care, always coming from the patients' perspective. We provide valuable advice, strategies, insights, experiences and helpful connections to patient organisations and other stakeholders, e.g. regulators, ethics committees, academic institutions and the pharmaceutical industry. This includes e.g. patient engagement strategy development, stakeholder identification, and improving system readiness on patient involvement. We are helping to take decisions and implement programmes that lead to more effective engagement with the patient community.
Patvocates is a mission driven, not-only-for-profit social enterprise. A share of our revenues will be retained and then donated to capacity building and education initiatives of the patient community, e.g. the EUPATI project.
More specifically, we are providing the following services:
Services provided to
patient advocacy organisations:
- Patient Advocacy and Capacity Building
- Development and implementation of patient summits and conferences
- Training on management, good governance and organisational growth of non-profit organisations
- Gathering patient-generated evidence underlining patient opinions
- Patient engagement in Research and Development
- Development and implementation of Community Advisory Boards
- Development of capacity for patient involvement in medicines research and development, regulatory affairs and health techology assessment
- Training on participation in ethics committees and Data Safety Monitoring Boards
- Organising, conducting and evaluating patient community-initiated and -led research
- Regulatory Affairs & Health Technology Assessment (HTA)
- Development of capacity and training for patient involvement in regulatory affairs and Health Technology Assessment
- Health Policy
- Training on EU policy
- Training on pricing and reimbursement
Training and consultancy provided to authorities, healthcare institutions and companies:
- Training on frameworks, guidances and policies
- Guidances, codes and compliance and legal issues working with patients and patient organisations
- Ethical aspects of patient involvement in different jurisdictions
- Creation of "system readiness" for patient engagement
- Establishment, development and expansion of "patient readiness" for effective engagement with patient organisations
- Definition and implementation of patient engagement processes, policies and frameworks
- Development of practical guidelines for patient involvement
- Measurement and metrics of patient engagement
- Development and measurement of best practice in working with patient organisations and patients
- Development of and training in output/performance based strategies for patient involvement
Patient involvement has become one of the focal points for innovation, research and development in health and biomedical research. However, involving patient communities in complex regulatory and corporate processes often proves challenging.
Patvocates can help you navigate the intersection of four key stakeholders in the process of knowledge production: industry, academia, regulators and patient representatives.