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The Patient Engagement Framework: a holistic approach to patient inclusion
IQVIA's Patient Engagement Framework supports comprehensive and consistent assessment and planning for the inclusion of patient needs and preferences
Oct 25, 2022
Patient centricity is a concept that has gained increasing currency in recent years as the pharmaceutical industry seeks to place patient needs at the heart of strategic decision making across the entire pharma value chain to meet the demands of evolving healthcare systems.
This is only truly possible if patients, their carers and loved ones, advocates, HCPs, and pharmaceutical companies have a common language to discuss issues and needs, and patients’ voices are amplified and heard rather than merely inferred. With the patient engagement framework, IQVIA proposes a structured approach to creating this language and ensuring the patient’s voice is heard at all stages of the decision-making process.
The impetus towards patient centricity and inclusion
The COVID-19 pandemic and its aftermath have given additional urgency to the need to achieve consistent patient focus, and at the same time have highlighted shortcomings of existing approaches which often fall short of true inclusion of the patient point of view.
The pandemic and post-pandemic environment have had a significant impact on the length and complexity of many patients’ journeys to effective diagnosis treatment. As a result, some patients present later and potentially in more advanced stages of disease, and the pool of available patients for certain therapies, often the most recently launched ones, has shrunk. Inevitably, this has consequences for care outcomes and created a backlog of untreated or undertreated patients which now must be reached. At the same time, treatments have been switched to more remote options where possible, and immune-compromised patients and their carers face new challenges.
Outside the pandemic dynamics, there are also other mid- and long-term developments increasing the importance of a patient-inclusive approach such as the rise of individualized medicine which necessitates closer involvement of patients, but also overall better treatment options for rare and complex diseases, including ones which are self- or home administrable. Tied in with this is the rise of healthcare digitalization which enables patients to self-monitor at home and communicate with their HCPs remotely. Clinical trials, too, are moving out of hospitals and research facilities closer to patients’ homes in the form of decentralized or hybrid trials.
The rationale for the concept of the Patient Engagement Framework
To fully embrace and reap the benefits of patient centricity, a complete, 360-degree view of the fundamental components of patient-centered asset strategies, clinical trial design, pre-launch planning and patient support programmes from the perspective of patients is needed.
It is vital that this view includes direct input from patients and patient organisations to ensure it reflects a true understanding of the patient perspective. This in turn necessitates a common framework and language as foundation for effective communication between all stakeholders.
To meet this need, IQVIA has collaborated with patient organisations and the pharmaceutical industry to create such a framework designed to support comprehensive and consistent assessment and planning for inclusion of patient needs and preferences through end-to-end strategic drug delivery.
The Patient Engagement Framework: Defining fundamental categories and roles of patient engagement
The patient engagement framework is intended to be used as a reference point by pharmaceutical companies in the development and positioning of therapies, by HCPs, by patients, their families and carers, and by patient organisations. It provides a comprehensive conceptual outline of the fundamental categories and roles of engaging with patients’ needs and preferences and lays the groundwork for a common understanding and a common language which bridges the communication gaps between pharmaceutical companies, HCPs, patients, their families and carers, and patient organisations.
The framework proposes four distinct sections focusing on clinical benefit, wellbeing, practicalities, and engagement and contribution.
Clinical benefit
Clinical benefit centers around understanding patients’ clinical expectations, disease burden, and preferred outcomes. The overarching goal is to achieve quality of life improvements for patients and their families by reducing the impact on the patient’s social life, employment, finances, education, travel burden etc., and reducing the impact on loved ones, family, and carers.
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.
Wellbeing
This section focusses on providing patients, their families, and their caregivers with support to build a healthy mindset and covers aspects outside the immediate medical care. This includes access to HCP-led mental health support systems during and after care, access to informal, patient and/or carer-led support communities both on social media and other virtual platforms and face-to-face, and support systems geared specifically to those around the patient, families, loved ones, and caregivers.
Practicalities
Practical, logistics, and cost covers aspects related to enabling patients managing their day-to-day lives by adjusting treatment settings, finances, informational needs, and broader treatment settings. The issues to consider range from ensuring access to treatment and continuity of care across settings and specialties to financial support for meeting treatment and associated costs, providing information about the disease and treatment, and support for daily activities like nurse care, long-term care, and end-of-life planning.
Engagement and contribution
This final section is concerned with patients’ need to feel part of a community of people with common experience and with their desire to participate in trials and thereby gaining agency in shaping current and future treatment. Achieving this includes ensuring patients are involved in decisions affecting the evolution of treatments such as designing treatment pathways and defining unmet need, and that they are supported by patient organizations and charities. It also means giving patients access to new treatments through trials developed around patients’ needs and enabling them to own their data for treatment and research purposes.
In short, engagement and contribution are about the need and desire of patients but also members of the wider society to become involved and make a difference.
Benefits of adopting the Patient Engagement Framework
The framework provides a concept for a structured approach to identify gaps and optimize patient centric initiatives. It is is designed to be used by chief patient officers, asset planners, medical affairs and brand teams in a range of situations including
- Ensuring that all stakeholders utilise a a common language and understanding of the needs which patients have and the issues they face.
- Improved strategic planning for patient engagement driven by a better understanding of patient issues. This starts right from the point of planning clinical development and trial protocols, which should incorporate input from patients, their carers and patient organizations at the beginning of the planning process.
- Implementing more effective execution on patient support, education and advocacy programs as a result of better communication.
- Enabling performance and impact evaluation to ensure continuous learning and growth for all actors involved in developing new therapies and bringing them to the patients.
If used consistently, the patient engagement framework is a valuable tool to ensure patient needs are at the heart of all strategic decisions along the pharma value chain.