Working internationally to educate, empower and mobilise patient representatives and clinicians

Advanced treatments offer new hope for patients with chronic, disabling or terminal diseases. But these treatments require policymakers and governments to ask challenging questions: How will these treatments be approved? Regulated? Reimbursed? To answer these questions, policymakers need to hear from those who will be directly affected — patients and clinicians.

 

The European Alliance for Patient Access (EAfPA) partners with patient advocacy groups, physicians and other healthcare professionals, as well as pan-European and regional organisations. With these groups, EAfPA holds educational meetings where stakeholders work towards consensus on key policy issues. These meetings lead to educational materials that capture the views of patient representatives and healthcare professionals, informing debate at the local, regional, national and EU levels.

 

Key Policy Issues

Informed Consent, Patient Choice and Shared Decision Making

  • Patients have a right to know about their treatment and their treatment options. For example, decisions about switching between biological therapies and biosimilars must remain in the hands of the treating physician and the patient.
  • Policymakers should ensure that, when decisions about switching between therapies based on cost saving occurs, the patient and physician receive timely and appropriate notification.

Pharmacovigilance

  • Pharmacovigilance must remain a priority for European policymakers to ensure that medicines patients use are safe.
  • Successes of the EU pharmacovigilance system should be help shape best practices across Europe.
  • Trainee clinicians should have academic programmes that prepare them to use pharmacovigilance systems once they become practicing healthcare professionals.

Pain Management

  • Pain is a major, overarching issue for millions of European citizens living with chronic conditions such as cancer or rheumatological or neurological conditions. Chronic pain significantly limits quality of life and should be a top priority of national health care systems.
  • Together, patients and healthcare providers should raise awareness the prevention, treatment and management of pain.
  • Policymakers should encourage research and strong policies that address the societal impact of pain across all sectors.

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