ES05.03 Discrepancies and Sustainable Access to Innovative Therapies: Transforming Patient Experience in to Patient Voice

Abstract

Recent years have seen an explosion in new therapies in lung cancer. Research has given us Targeted Therapies, Immunotherapies, minimally invasive thoracic surgery and better directed radiotherapy techniques The challenge is to ensure patients have equitable access to up to date best practice treatment and care, taking advantage of the research developments. There are many reasons for variability in such access - in the main, new therapies cost and Healthcare systems are under enormous financial pressure; resource availability, priority setting and pressures differ between healthcare systems. Furthermore, the pace of change in lung cancer is such that it is difficult to keep up with new developments. Health systems are inherently slow to enact change. Each healthcare system will have its own unique approach to ensuring access to innovative new therapies. In dealing with the reality of finite and scares resources, many countries have developed formal decision making bodies, undertaking Health Technology Assessment (HTA). These processes interrogate both clinical and health economic data. Ethical considerations and patient preference can also be taken in to account. Advocates can work with HTA agencies to ensure that the experience of the patient population impacted by the therapy under review, is part of the assessment. Where assessment processes are not present, advocates can also use the patient experience to work with policymakers in ensuring that a particular disease has enough resources devoted to it. Using Patient Experience in improving access to new therapies: Through patient experience, advocates have a voice in shaping the process whereby patients access new therapies. There is potential to input across the whole process – designing clinical trials; regulation/licencing; HTA and access procedures. Only people living with a particular health condition can truly describe the challenges they face and the impact that a new therapy will have upon them. Quality of life scores and clinical trial data do not fully reflect patient priorities on aspects of their health and wellbeing. Hence the reason that formal and informal processes have been developed to allow patient advocates to submit the patient perspective to decision makers. In so doing, advocates need to Know the process that is required in their own healthcare system – many Regulators (eg, the FDA) and HTA bodies offer information, training and support to advocates 1. Have the credibility to speak on behalf of their patient community - the ability to contact and survey appropriate patients. 2. Understand the experience of the patient group, receiving the therapy under review. What are the needs and experiences of this patient group? 3. Share patient experience of the therapy under review. What information and data is required to make a contribution? What other therapy options are available? Patient stories can be very powerful. Measuring the value which patients attribute to individual therapies, is an area of current interest [1], [2]. This is complex. It can be difficult to define a single set of patient values on a particular therapy. There are many individual patient variables – age, education, expectation, personal finances, social/religious/cultural factors. The focus, therefore, needs to be on inputting a broad range of outcomes, which patients regard as most relevant. Lung Cancer Patient Specific Issues to consider: In lung cancer, we have a number of specific challenges. Globally, there is a lack of lung cancer patient advocate organisations, who have the ability to engage with this. Lung cancer patients tend to be older, have poorer Performance Status and other co-morbidities. It is often difficult to reach a representative patient group. A better understanding of lung cancer biology and the targeting of therapies, means that new therapies and indications tend to be for smaller, more segmented patient groups. It can be challenging for advocacy organisations to reach these patients in significant numbers. This presentation will, therefore, expand on the areas above and encourage advocates to engage with policy makers to ensure that the lung cancer patient experience is incorporated into decision making on access to new therapies. [1] Narbutas et al, Overview on Patient Centricity in Cancer Care. Frontiers in Pharmacology, Oct 2017; 8: Article 698 [2] Addario et al, Patient value: Perspectives from the advocacy community. Health Expectations. 2018; 21: 57-63. Therapy access, patient voice