scholarly journals Expertise, experience, and excellence. Twenty years of patient involvement in health technology assessment at NICE: an evolving story

Author(s):  
Laura Norburn ◽  
Lizzie Thomas

Abstract From its inception in 1999, the National Institute for Health and Care Excellence (NICE) committed to including the expertise, experiences, and perspectives of lay people, patients and carers, and patient organizations in its health technology assessments (HTAs). This is our story of patient involvement in HTA: from early methods designed for use when assessing medicines, widening to address the different requirements of HTAs for interventional procedures, medical technologies, and diagnostic technologies. We also chart the evolution and development of all our patient involvement methods over the past 20 years through regular evaluation and by responding to external challenge. However, we know that processes and methods alone are not enough. Through case studies we demonstrate the value of patient involvement in HTA and highlight the unique perspectives and experiences that patients bring to HTA committees. Finally, we discuss the underpinning principles and commitments that have made NICE a world leader in delivering meaningful and legitimate patient involvement.

2019 ◽  
Vol 35 (4) ◽  
pp. 253-256 ◽  
Author(s):  
Meredith Vanstone ◽  
Julia Abelson ◽  
Julia Bidonde ◽  
Kenneth Bond ◽  
Raquel Burgess ◽  
...  

AbstractIncluding information and values from patients in HTA has the potential to improve both the process and outcomes of health technology policy decisions. Accordingly, funding and structural incentives to include patients in HTA activities have increased over the past several years. Unfortunately, these incentives have not yet been accompanied by a corresponding increase in resources, time, or commitment to responsiveness. In this Perspectives piece, we reflect on our collective experiences participating in, conducting, and overseeing patient engagement activities within HTA to highlight the ethical challenges associated with this area of activity. While we remain committed to the idea that patient engagement activities strengthen the findings, relevance, and legitimacy of health technology policy, we are deeply concerned about the potential for these activities to do ethical harm. We use this analysis to call for action to introduce strong protections against ethical violations that may harm patients participating in HTA engagement activities.


Author(s):  
Ana Toledo-Chávarri ◽  
Marie-Pierre Gagnon ◽  
Yolanda Álvarez-Pérez ◽  
Lilisbeth Perestelo-Pérez ◽  
Yolanda Triñanes Pego ◽  
...  

Abstract Introduction This paper aims to describe the development of a flowchart to guide the decisions of researchers in the Spanish Network for Health Technology Assessment of the National Health System (RedETS) regarding patient involvement (PI) in Health Technology Assessment (HTA). By doing so, it reflects on current methodological challenges in PI in the HTA field: how best to combine PI methods and what is the role of patient-based evidence. Methods A decisional flowchart for PI in HTA was developed between March and April 2019 following an iterative process, reviewed by the members of the PI Interest Group and other RedETS members and validated during an online deliberative meeting. The development of the flowchart was based on a previous methodological framework assessed in a pilot study. Results The guidelines on how to involve patients in HTA in the RedETS were graphically represented in a flowchart. PI must be included in all HTA reports, except those that assess technologies with no relevant impact on patients’ experiences, values, and preferences. Patient organizations or expert patients related to the topic of the HTA report must be identified and invited. These patients can participate in protocol development, outcomes' identification, assessment process, and report review. When the technology assessed affects in a relevant way patient experiences, values, and preferences, patient-based evidence should be included through a systematic literature review or a primary study. Conclusions The decisional flowchart for PI in HTA contributes to the current methodological challenges by proposing a combination of direct involvement and patient-based evidence.


Author(s):  
Mark Rasburn ◽  
Heidi Livingstone ◽  
Sarah E. Scott

Abstract The National Institute for Health and Care Excellence (NICE) worked with patients and staff from six patient organizations to review existing health technology assessment (HTA) methods and coproduce proposals to improve the following: patient involvement, how patient evidence is identified and considered by committees, and the support offered to patient stakeholders. This engagement identified important factors that HTA bodies need to understand to enable meaningful patient and public involvement (PPI), such as having clearly documented processes, appropriate evidence submission processes, transparent decisions, and suitable support. This work demonstrated the benefits of HTA bodies working collaboratively with patient stakeholders to improve PPI. By doing so, HTA bodies can increase their knowledge and understanding of the barriers faced by patient stakeholders to develop appropriate solutions to remove them. The coproduction approach improved stakeholder engagement methods, provided a better analysis of data, supported the development of meaningful conclusions, and improved stakeholder relationships.


2020 ◽  
Vol 36 (3) ◽  
pp. 191-196 ◽  
Author(s):  
Giovanni Tafuri ◽  
Chantal Bélorgey ◽  
Carlo Favaretti ◽  
Edith Frénoy ◽  
Flora Giorgio ◽  
...  

The European Network for Health Technology Assessment (EUnetHTA) organizes an annual Forum with stakeholders to receive feedback on its activities, processes, and outputs produced. The fourth edition of the EUnetHTA Forum brought together representatives of HTA bodies, patient organizations, healthcare professionals (HCPs), academia, payers, regulators, and industry. The aim of this paper is to provide an overview of the highlights presented at the 2019 EUnetHTA Forum, reporting the main items and themes discussed in the plenary panel and breakout sessions. The leading topic was the concept of unmet medical need seen from different stakeholders' perspectives. Breakout sessions covered the joint production of assessment reports and engagement with payers, patients, and HCPs. Synergies, pragmatism, and inclusiveness across Member States and stakeholders were emphasized as leading factors to put in place a collaboration that serves the interest of patients and public health in a truly European spirit.


2021 ◽  
Vol 37 (S1) ◽  
pp. 26-26
Author(s):  
Scott Gibson ◽  
Sita Saunders ◽  
Amanda Hansson Hedblom ◽  
Maximilian Blüher ◽  
Rafael Torrejon Torres ◽  
...  

IntroductionThe United Kingdom spends approximately GBP4.2 billion (USD5.6 billion; EUR4.7 billion) each year on medical devices, but healthcare providers receive little health technology assessment (HTA) guidance on cost-effective device procurement. Our objective was to assess the availability of HTA guidance for medical technologies and to identify key challenges related to the economic assessment of these technologies.MethodsNational Institute for Health and Care Excellence technology appraisal (TA) and Medical Technologies Evaluation Programme (MTEP) appraisals published online between November 2009 and October 2020 were identified. The “case for adoption” recommendation, type of devices, and critiques of economic analyses for each MTEP appraisal were extracted and categorized.ResultsIn comparison to 415 publicly available TAs for pharmaceuticals, only 45 medical technologies have been appraised through the MTEP. MTEP-submitted technologies can be categorized into diagnostic (7), monitoring (3), prophylaxis (5), therapeutic (28), and other (2). Furthermore, 11 were implants, seven were used by patients, and 27 had provider interaction. Major points of MTEP criticism were a failure to model cost consequences, training costs, and organizational impact. There was also the barrier of transferring costs across budgeting divisions.ConclusionsIn comparison to HTA guidance for pharmaceuticals, there is a dearth of medical device guidance. Therapeutic and implantable devices appear to be disproportionately overrepresented in the MTEP process. This may be because their appraisal is most akin to pharmaceuticals, for which HTA processes are well established. To encourage more HTAs of medical devices, HTA guidance should elaborate on issues specifically related to medical devices.


2017 ◽  
Vol 33 (S1) ◽  
pp. 176-176
Author(s):  
Kathi Apostolidis ◽  
Lydia Makaroff ◽  
Francesco De Lorenzo ◽  
Francesco Florindi

INTRODUCTION:In Europe, the work done by the European Commission and the European Network for Health Technology Assessment (EUnetHTA) has consolidated the role of Health Technology Assessment (HTA), and promises to better harmonize its impact across European Union (EU) countries. However, more work is needed to improve patient involvement in assessing new health technology, and in developing research priorities.METHODS:The European Cancer Patient Coalition (ECPC) developed a model for engagement of patients in HTA based on the experience from: •ECPC's ‘Value of Innovation in Oncology’ White Paper, which includes input from ECPC's membership•ECPC's leading role in the Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) study, funded by the Innovative Medicines Initiative, to develop guidelines on how patient-preference studies should be performed throughout the development of new medical treatments.RESULTS:The ECPC ‘Value of Innovation in Oncology’ White Paper was launched in 2017. The paper provides ECPC's policy position on key obstacles to equitable access to meaningful innovation. The paper recommends the establishment of an EU-wide HTA body to reduce delays and variations in access and to avoid duplication of effort by individual Member States. The paper also recommends that patients should be formally and routinely included in HTA policy and operations at EU and at national levels. These recommendations were also submitted to the European Commission's public consultation on strengthening EU cooperation on HTA.Through its work in PREFER, ECPC is helping to improve how patient preferences are measured and valued to capture the impact of health technology on patients daily life. Patient preferences are concerned with measuring how patients value components such as treatment end points, route of administration, treatment duration, treatment frequency, frequency of side-effects, price, and quality of life.CONCLUSIONS:Patient organization involvement in HTA is vital. Patient organizations offer unique insights, experiences, identify unmet needs, and can help to produce practical recommendations


Author(s):  
Ana Toledo-Chávarri ◽  
Yolanda Triñanes Pego ◽  
Eva Reviriego Rodrigo ◽  
Nora Ibargoyen Roteta ◽  
Blanca Novella-Arribas ◽  
...  

Objective The Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS) defined a patient involvement (PI) framework for health technology assessment (HTA) activities in 2016. The aim of this study is to evaluate the process and impact of those PI initiatives that were implemented in the first year following the publication of this new framework. Methods A survey was sent to those HTA researchers who implemented PI in RedETS projects. Responses were reviewed by two authors. An adapted thematic analysis was performed and the results were later discussed by all authors. Results Six responses from six agencies/units were analyzed. The objectives of PI initiatives were the following: inclusion of patient perspectives, preferences and values; elicitation of important health outcomes measures; and barriers, facilitators, or suggestions for implementation. Different methods were used for PI: surveys, focus groups, in depth interviews, and participation in an expert panel. Five main themes emerged: (i) challenges with the recruitment process, (ii) needs identified, (iii) impact of PI, (iv) lessons learned, and (v) suggestions for the future. Conclusions PI initiatives within the RedETS framework were tailored to each HTA project, its specific goals and the individual needs and resources of each HTA agency. The results also pointed out how PI has a relevant impact that has enriched RedETS products providing key information on experiences, values, and preferences of patients, contributions that benefit the HTA and the process of drawing up recommendations. The main challenges were related to recruitment processes and capacity building.


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