The Patient Engagement Framework: A Holistic Approach to Patient Inclusion

The framework offers four distinct sections focusing on clinical benefit, wellness, practicality, engagement, and contribution.

Clinical benefit

Clinical benefits are centered around understanding patient clinical expectations, disease burden and desired outcomes. The overriding objective is to improve the quality of life of patients and their families by reducing the impact on social life, employment, finances, education, the burden of travel, etc., and by reducing the impact on loved ones, family and caregivers.

The other categories in this section support and contribute to this overarching goal. Clinical outcomes prioritize measurable changes in health, function and quality of life as prioritized by patients and caregivers.

Welfare

This section focuses on providing patients, their families and caregivers with support to develop a healthy mindset and covers aspects outside of immediate medical care. This includes access to professionally led mental health support systems during and after care, access to informal, patient and/or caregiver led support communities, both on social networks and other virtual and face-to-face platforms, and specially designed support systems for the patient’s acquaintances, families, loved ones and caregivers.

Practice

The practical, logistical and cost aspects cover aspects allowing patients to manage their daily life by adjusting treatment parameters, finances, information needs and broader treatment parameters. Issues to consider range from ensuring access to treatment and continuity of care across settings and specialties, to financial support to meet treatment and associated costs, providing information about the disease and the treatment, and support for daily activities such as nursing, long-term care, and end-of-life planning.

Commitment and contribution

This final section addresses patients’ need to feel part of a community of people with a common experience and their desire to participate in trials and thus gain agency in shaping current and future treatments. Achieving this means ensuring that patients are involved in decisions affecting the course of treatment, such as designing treatment pathways and defining unmet needs, and that they are supported by healthcare organisations. patients and charities. It also means giving patients access to new treatments through trials developed around patient needs and allowing them to become owners of their data for therapeutic and research purposes.

In short, engagement and contribution is about the need and desire of not only patients but also members of society at large to get involved and make a difference.

Benefits of Adopting the Patient Engagement Framework

The framework provides a concept of a structured approach to identify gaps and optimize patient-centered initiatives. It is designed for use by patient managers, asset planners, medical affairs and brand teams in a range of situations, including

  • Ensure that all stakeholders use a common language and understanding of patient needs and the issues they face.
  • Improved strategic planning for patient engagement through better understanding of patient issues. This starts from the moment of clinical development planning and trial protocols, which should incorporate input from patients, their caregivers and patient organizations early in the planning process.
  • Implement more effective delivery of patient support, education and advocacy programs through better communication.
  • Enable the evaluation of performance and impact to ensure continuous learning and growth for all actors involved in the development of new therapies and their delivery to patients.

If used consistently, the patient engagement framework is a valuable tool to ensure that patient needs are at the heart of all strategic decisions throughout the pharmaceutical value chain.

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