Abstract
Health technology assessment (HTA) is intended to determine the value of health technologies and, once a technology is recommended for funding, bridge clinical research and practice. Understanding the values and beliefs expressed by patients and health professionals can help guide this knowledge transfer and work toward managing the expectations of end users. We gathered patient and patient group leader experiences to gain insights into the roles that patients and patient advocacy groups are playing. We argue that through partnerships and co-creation between HTA professionals, researchers and patient advocates we can strengthen the HTA process and better align with service delivery where person-centered care and shared decision making are key elements. Patient experiences and knowledge are important to the democratization of evidence and the legitimacy of HTAs. Patient preference studies are used to balance benefits with potential harms of technologies, and patient-reported outcomes (PROs) can measure what matters to patients over time. A change in culture in HTA bodies is occurring and with further transformative thinking patients can be involved in every step of the HTA process. Patients have a right to be involved in HTAs, with patients' values central to HTA deliberations on a technology and where patients can provide valuable insights to inform HTA decision-making; and in ensuring that HTA methodologies evolve. By evaluating the implementation of HTA recommendations we can determine how HTA benefits patients and their communities. Our shared commitment can positively effect the common good and provide benefits to individual patients and their communities.
Highlights
The COVID-19 pandemic has brought about many changes in our healthcare systems
The Medicines and Healthcare products Regulatory Agency (MHRA) as the UK regulator for market access has worked with patient advocates to develop and release its first patient involvement strategy [3], placing it in line with, for example, the European Medicines Agency (EMA) [4] and U.S Food & Drugs Administration Agency (FDA) [5]
Greater benefit and effectiveness can be generated by integrating patient advocates and patient advocacy groups into Health technology assessment (HTA), rather than treating them as separate from decision-making bodies
Summary
The COVID-19 pandemic has brought about many changes in our healthcare systems. Some of these can provide benefits for patients, such as widespread use of telemedicine and decentralized clinical trials [1]. In recent years patient advocates and their organizations have become better informed, educated and trained to concentrate on their patients’ experiences and knowledge so to effectively contribute to regulatory and HTA decision-making [e.g., [37, 51,52,53]] They are involved in clinical trial design [54, 55]. A system to monitor and provide feed-back on how technologies are being utilized within the healthcare system, and for whom, could complete the loop for evaluating the implementation of HTA recommendations This can create a “learning HTA and healthcare environment” that measures outcomes to inform them and builds on value over time [US Agency for Health care Research and Quality (AHRQ) https://www.ahrq.gov/learning-health-systems/index.
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