Patient Involvement In Health Technology Assessment Research Articles

Stakeholder perspectives on the current status and potential barriers of patient involvement in health technology assessment (HTA) across Europe.

There are wide variations in the practices of patient involvement in health technology assessment (HTA) in Europe. The field is lacking a consensus on good practices, leading to divergent processes, methods, and evaluation of patient involvement. To identify potential good practice approaches and current gaps, a structured online survey was conducted among HTA stakeholders, including HTA practitioners, patient stakeholders, industry representatives, and others who had experienced patient involvement in HTA. The questionnaire was co-created by HTA experts, patient stakeholders, and industry representatives and disseminated between 29 April and 14 September 2022. Responses (n=168) were submitted from thirty-two European countries by HTA practitioners (n=33), patient stakeholders (n=75), industry stakeholders (n=42), providers (n=5), academics (n=7), and others (n=6). The responses indicated that "allowing access to treatments that have demonstrated value"is the principle rationale for conducting HTA. In terms of the importance of patient involvement, there was consensus across stakeholder groups that "patients have insights and information [that] no other stakeholder has" and that patient involvement is important "to inform HTA which evidence is most patient-relevant". Shortcomings were identified in the lack of systematic and transparent processes, an unsatisfactory level of information and guidance, and minimal communication and collaboration. The diverse stakeholders who responded highlighted the need for improving specific aspects of patient involvement practices, including better guidance and information, a more consistent flow of communication between the HTA body and participating patient stakeholders, and the need to develop and implement a consensus on good practices.

The three-domain impact framework for characterizing impact of patient involvement in health technology assessment.

Evaluating the impact of patient involvement in health technology assessments (HTA) may help improve practices and avoid ineffective activities. Evaluation, however, continues to be infrequent, inconsistent, and often only relates to process quantity or quality. The Patient and Citizen Involvement in HTA Interest Group (PCIG) within Health Technology Assessment International set out to contextualize this impact to support evaluation. Given the lack of established methodology to measure impact, the team performed a qualitative analysis of first-hand accounts about perceived changes in HTA due to involvement of patient stakeholders. A questionnaire was developed, piloted, and rolled out to collect personal perspectives from stakeholders with relevant experience. The stories were analyzed in the aggregate to identify themes in the data. From January 2019 to September 2021, twenty-four responses were collected through PCIG's network. Responses (including one joint industry-HTA body submission) came from patient representatives (12), HTA bodies (11), and industry representatives (2) from North America (5), South America (3), Europe (13), and Asia Pacific (3). Based on themes commonly reported, a three-domain framework for evaluating impact is proposed: impact on basis of HTA result or recommendation, impact on HTA body, and impact on patient participants. The framework includes components under each domain to support reporting. Using the Three-Domain Impact Framework may be useful in identifying, evaluating, and communicating the value of patient involvement in HTA. Enhancing and increasing reporting practices may improve transparency and facilitate process improvements for meaningful integration of patient stakeholders into HTA appraisals across jurisdictions.

PP13 Results Of An International Survey About Barriers In Patient Involvement In Health Technology Assessment Of Digital Health Technologies

IntroductionIn recent years, several efforts have been initiated by health technology assessment (HTA) agencies to increasingly incorporate patient involvement (PI) into their assessment processes. The rationale behind PI in HTA is that patients can give their perspective and experiences about health, illness and the use of health technologies, complementing clinical and healthcare system standpoints.A recent systematic review summarized current evidence on the barriers and facilitators of PI in HTA. Barriers and facilitators were classified according to the context in which they appear, as organizational, decision-making, political and community-related.Digital health technologies offer a singular opportunity to address some challenges faced by healthcare systems. However, we hypothesized that their intrinsic characteristics may have some implications for PI in digital HTA. We conducted a survey to gain knowledge about barriers in PI in digital HTA.MethodsThe survey was elaborated using Microsoft Forms and consisted of 31 questions divided into four blocks (organizational, decision-making, political and community-related). It was sent to three Spanish, one Catalan and one International patient umbrella organizations. The results were analysed using Microsoft Excel.ResultsA total of four responses were received from three Spanish and one Catalan patient umbrella organizations. Results showed high, partial, and low concordance among organizations in 65 percent, 19 percent and 16 percent of the answers received, respectively. According to the results, most of the barriers for PI seem to be the same for HTA of digital health technologies as for other types of health technologies. However, two or three of the four umbrella organizations consider that HTA of digital health technologies might pose greater challenges in terms of achieving significant patient participation, sufficient patient training and knowledge of HTA processes, proper preparation and tools of the HTA experts and logistics during the HTA process.ConclusionsBarriers in PI are mostly the same for digital or other types of health technologies. Few differences are related to patient training, tools, and logistics during HTA process.

OP55 Did It Matter? Developing A Common Framework For Characterizing Impact Of Patient Involvement In Health Technology Assessment

IntroductionWhile the impact of health technology assessments (HTAs) is often not evaluated, some HTA bodies measure the impact of patient involvement in their processes. Evaluating how patient involvement is perceived by all stakeholders may help to improve practices and avoid activities that unduly burden patient and HTA communities. Frameworks and tools have been designed to analyze the impact of patient engagement along the healthcare development lifecycle. Reporting on the impact of patient involvement in HTA-specific activities, however, continues to be infrequent, unstandardized, and not comprehensive.Having a common framework to characterize and report on the impact of patient involvement may enable this practice to be optimized and harmonized across HTA contexts.MethodsThe Patient and Citizen Involvement Interest Group (PCIG) within Health Technology Assessment International set out to contextualize this impact and support reporting. A questionnaire was developed, piloted, and rolled out to collect multistakeholder personal perceptions of the impact of patient involvement in individual HTAs. Questions included: “What difference did you feel patient involvement made in the HTA activity?” and “What would have been missed without patient involvement?”. From January 2019 to September 2021, 24 responses (including one joint submission) were collected through the PCIG’s network from HTA bodies (11), patient representatives (12), and industry representatives (2) from North America (5), South America (3), Europe (13), and Australia (3).ResultsCommon themes were extracted from these experiences to characterize the impact of patient participation in HTA processes. Based on these commonalities, a harmonized framework consisting of three “domains” is proposed: impact on the decision-making process; impact on patient stakeholders; and impact on the HTA body. The framework includes a set of items under each domain to support reporting.ConclusionsBy having common language and measures, the HTA community can harmonize processes across jurisdictions to evaluate and communicate the value of patient involvement in HTA. Improving consistent reporting may facilitate more efficient process improvement for meaningful integration of patient stakeholders into HTA decision-making.

OP98 Improving Patient Involvement In Health Technology Assessments: Is It Enough To Train Just The Patients?

IntroductionPatient involvement is a core principle of the National Institute for Health and Care Excellence (NICE) and we continually strive to improve patient involvement in health technology assessments (HTAs) of medicines. We iteratively surveyed and reviewed how patient involvement can be improved with patient organizations, patient experts, NICE HTA decision-making committees, and staff. We re-examined feedback that we collect on an ongoing basis, as well as one-off evaluations, to check how we can improve patient involvement.Improvements ranged from support for and how we work with patient stakeholders to training the various stakeholders who take part in the HTA process to build up a comprehensive and evolving training package and stimulate a cycle of continually improving patient involvement.MethodsWe reviewed the outcomes and recommendations from the following larger projects:•Review of public involvement across NICE 2015;•Improving meaningful patient involvement in HTAs 2019;•Improving patient expert involvement in committee meetings 2019; and•The value of patient expert input 2022.Feedback from monthly surveys of patient experts and organizations was also reviewed.ResultsThe results included recommendations about:•Changing the culture so that patient involvement at NICE is everybody’s business;•The key role of the committee chair in including patient experts;•The importance of committee culture and behavior in including and valuing patient input;•The need for a greater understanding of how NICE technical teams can best support and obtain the most meaningful evidence from patients; and•What additional support and training patient organizations and experts want from NICE’s public involvement team.ConclusionsWe concluded that not only patients need training, but also everybody included in the NICE medicines HTA process. Over time we have gradually added to our training portfolio for patient organizations and experts as well as NICE staff and independent committees. We now run patient involvement as part of the induction program for all staff, technical staff, medicines committee chairs, and NICE committees and lay members.We also provide monthly training for patient organizations and patient experts.

Recommendations for patient involvement in health technology assessment in Central and Eastern European countries.

Meaningful patient involvement in health technology assessment (HTA) is essential in ensuring that the interests of the affected patient population, their families, and the general public are accurately reflected in coverage and reimbursement decisions. Central and Eastern European (CEE) countries are generally at less advanced stages of implementing HTA, which is particularly true for patient involvement activities. As part of the Horizon2020 HTx project, this research aimed to form recommendations for critical barriers to patient involvement in HTA in CEE countries. Built on previous research findings on potential barriers, a prioritisation survey was conducted online with CEE stakeholders. Recommendations for prioritised barriers were formed through a face-to-face workshop by CEE stakeholders and HTx experts. A total of 105 stakeholders from 13 CEE countries completed the prioritisation survey and identified 12 of the 22 potential barriers as highly important. The workshop had 36 participants representing 9 CEE countries, and 5 Western European countries coming together to discuss solutions in order to form recommendations based on best practices, real-life experience, and transferability aspects. Stakeholder groups involved in both phases included HTA organisation representatives, payers, patients, caregivers, patient organisation representatives, patient experts, health care providers, academic and non-academic researchers, health care consultants and health technology manufacturers/providers. As a result, 12 recommendations were formed specified to the CEE region's context, but potentially useful for a broader geographic audience. In this paper, we present 12 recommendations for meaningful, systematic, and sustainable patient involvement in HTA in CEE countries. Our hope is that engaging more than a hundred CEE stakeholders in the study helped to spread awareness of the importance and potential of patient involvement and that the resulting recommendations provide tangible steps for the way forward. Future studies shall focus on country-specific case studies of the implemented recommendations.

OP82 Patient Involvement In Health Technology Assessment

IntroductionPatients are increasingly involved in the decision-making process for health technology assessment (HTA), but the question of at what stage they can be involved is still controversial. In Kazakhstan, the HTA process began in 2010. Over the past 2 years, implementation of a project to develop a priority-setting tool based on evidence-informed deliberative processes has made it possible to discuss the participation of patients in HTA. We explored the possibilities of participation of patients or a patient-oriented group in the HTA process.MethodsStructured interviews were held with eight people with interests in HTA. Two were representatives of universities, two from a patient-oriented group, two experts in HTA, and two physicians. Interviews were held online by mobile phone or Zoom for 25–30 minutes. Question structures were formed based on the report ‘Patient Involvement in Health Technology Assessment in Europe 2010’. Seven stages were considered.ResultsAll participants partially or completely agreed with the involvement of patients at the HTA stages of identification and prioritization. One or two did not agree with their involvement at the HTA assessment, information production, internal and external review, and diffusion and dissemination stages. Challenges for patient involvement in HTA can be related to other commitments for patients and their carers, lack of financial affordability, conflict of interest, and lack of capacity of the HTA agency to involve them. Five participants agreed on challenges for patients to being meaningfully involved in decision-making on health technologies. These included understanding which institution makes the decisions, finding an interlocutor within the decision-making body, and understanding the decision-making process. Other issues were technical and language difficulties, lack of commitment from decision-makers and the legal or policy framework for patient involvement in HTA decision-making.ConclusionsPatients can participate in HTA, but the HTA agency must first prepare and agree on the level of patient participation, and develop measures to reduce barriers such as language difficulties, and patient obligations.

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries.

Patients' perspectives are important to identify preferences, estimate values and appreciate unmet medical needs in the process of research and development and subsequent assessment of new health technologies. Patient and public involvement in health technology assessment (HTA) is essential in understanding and assessing wider implications of coverage and reimbursement decisions for patients, their relatives, caregivers, and the general population. There are two approaches to incorporating the patients' voice in HTA, preferably used in a mix. In the first one, patients, caregivers and/or their representatives directly participate at discussions in different stages of the HTA process, often at the same table with other stakeholders. Secondly, patient involvement activities can be supported by evidence on patient value and experience collected directly from patients, caregivers and/or their representatives often by patient groups Patient involvement practices, however, are limited in Central and Eastern European (CEE) countries without clear methodology or regulatory mechanisms to guide patient involvement in the HTA process. This poses the question of transferability of practices used in other countries, and might call for the development of new CEE-specific guidelines and methods. In this study we aim to map potential barriers of patient involvement in HTA in countries of the CEE region.

Development of an international template to support patient submissions in Health Technology Assessments.

To develop an international template to support patient submissions in Health Technology Assessments (HTAs). This was to be based on the experience and feedback from the implementation and use of the Scottish Medicines Consortium's (SMC) Summary Information for Patient Groups (SIP). To gather feedback on the SMC experience, web-based surveys were conducted with pharmaceutical companies and patient groups familiar with the SMC SIP. Semistructured interviews with representatives from HTA bodies were undertaken, along with patient group discussions with those less familiar with the SIP, to explore issues around the approach. These qualitative data informed the development of an international SIP template. Survey data indicated that 82 percent (18 of 22 respondents) of pharmaceutical company representatives felt that the SIP was worthwhile; 88 percent (15/17) of patient group respondents found the SIP helpful. Both groups highlighted the need for additional support and guidance around plain language summaries. Further suggestions included provision of a glossary of terms and cost-effectiveness information. Patient group interviews supported the survey findings and led to the development of a new template. HTA bodies raised potential challenges around buy-in, timing, and bias connected to the SIP approach. The international SIP template is another approach to support deliberative processes in HTA. Although challenges remain around writing summaries for lay audiences, along with feasibility considerations for HTA bodies, the SIP approach should support more meaningful patient involvement in HTAs.

An institutional ethnographic analysis of public and patient engagement activities at a national health technology assessment agency.

The practice of public and patient engagement (PPE) in health technology assessment (HTA) has spread worldwide, yet gaps in knowledge remain. We carried out an institutional ethnography of the Canadian Agency for Drugs and Technologies in Health (CADTH) public and patient involvement in HTA. The research took place over 15 months and included observational work in the institutional settings, text review, and interviews with individuals working for or involved with the agency. We found that despite demonstrated commitment to PPE, organizational history, governance structure, and practices were impediments to a unified approach to PPE. Unclear role descriptions for committee members and differences in philosophy and priority given to PPE across the organization presented challenges to effective participation. The high degree of value given to evidence-based principles at times conflicted with meaningful integration of patient input. A lack of clear goals and processes, roles, and differential treatment of evidence in PPE served to minimize the importance of patient experiences and to displace their validity. An acknowledgment of conflicts between multiple epistemic traditions at work within HTA activities may strengthen organizational approaches to PPE. HTA organizations can learn from this study by reflecting on the challenges described and the recommendations offered to address them. We suggest solidifying CADTH's commitment to PPE with clear agency-wide roles and direction, values, and outcomes, a comprehensive framework, and policy and procedures. An acknowledgment of diverse epistemic traditions, as well as leadership and expertise in PPE, will strengthen CADTH's PPE activities and sustain its leadership position in the HTA field.

Role of patients' organizations in Health Technology Assessment: a Habermasian system and lifeworld perspective.

Patient and public involvement in Health Technology Assessment (HTA) is gaining increased interest among research and policy communities. Patients' organizations represent an important link between individual patients and the health system. Social theories are increasingly being used to explain doctor-patient-system interactions, expanding understanding beyond the mere clinical perspective. In this sense, patient involvement in HTA can also be considered through the Habermas's theory of communicative action. From a Habermasian perspective, HTA as part of the instrumental rationality contributes to an increased efficiency of resource use within the system; however, such rationalization threatens to colonize the lifeworld by making it "increasingly state administered with attenuated possibilities for communicative action as a result of the commercialization and rationalization in terms of immediate returns." Using Habermasian system/lifeworld framework, this paper explores opportunities and obstacles to patient involvement in HTA, whereby trying to understand current and possible roles of patients' organizations as a mediating force between HTA as a function of the system and the lifeworld represented by patients.

Development of a decisional flowchart for meaningful patient involvement in Health Technology Assessment.

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. 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. 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. The decisional flowchart for PI in HTA contributes to the current methodological challenges by proposing a combination of direct involvement and patient-based evidence.

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

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.

Exploration of the visibility of patient input in final recommendation documentation for three health technology assessment bodies.

Health technology assessment (HTA) recommendations informed by patient concerns are seen to ensure democracy and legitimacy. We explored how written and oral patient involvement in two HTAs was reported on in publicly available final recommendations and discussion summaries of appraisal committees from three HTA bodies. We aimed to gain insights into how patient input was utilized by appraisal committees to better understand the goals of patient involvement and how these are being achieved. In each of the three HTA bodies, templated submission questionnaires provide a formal process for seeking written patient group input. Additionally, the National Institute for Health and Care Excellence (NICE) selects patient experts to provide a templated submission and attend appraisal committee meetings. For Scottish Medicines Consortium (SMC), a patient advocate and clinician combined meeting (PACE) discussed the cancer drug, referred to in the final recommendation. The discussion summaries of all appraisal committees contained references to patient involvement. Where two mechanisms for patient involvement were provided, oral input from the expert patients and PACE were more clearly documented than information from written patient group submissions. NICE reports focused on the perspective of the patient expert. The SMC report highlighted feedback from the PACE throughout. We suggest that the lack of clear reporting on the use of patient group input in deliberations and therefore accountability to patient groups limits progress in patient involvement in HTA. Patient groups may therefore not have a clear understanding of what information they can best provide to inform deliberations, and in reporting back to members.

PNS377 BARRIERS AND ENABLERS TO PATIENT ENGAGEMENT IN THE HEALTH TECHNOLOGY ASSESSMENT PROCESS: AN IRISH PERSPECTIVE

To explore the barriers/enablers to patient engagement in health technology assessments (HTA) in Ireland. Recently, there is an increased focus on patient involvement in HTAs. In 2016, the Irish National Centre for Pharmacoeconomics launched their patient organisation (PO) HTA submission template. POs in Ireland have also made calls to be more involved in all stages of reimbursement decision-making. However, little is known about the resources required for POs to contribute to HTAs, and whether resource capacity influences evidence submission rates/overall engagement in HTAs. This research explores POs current resource capacity, their ability to complete HTA evidence submissions, and elicits their opinions regarding the value placed on patient engagement by assessment bodies. A mixed method, cross-sectional survey of Irish POs (n=76) was conducted via an online questionnaire. Descriptive and summary statistics were employed to analyse quantitative data points. A detailed thematic analysis methodology was also implemented to analyse open-text questionnaire responses. 86% of respondents have >100 members. The average annual reported PO budget was €777,083. 71% of POs were aware of the patient HTA submission template. 57% of respondents who had an opportunity to submit evidence, did not do so. 14% reported they were aware of an opportunity to submit but were unable due to time/resource constraints. All POs who contributed to HTAs stated it was time consuming and impacted their other responsibilities. 71% of POs thought it necessary to be provided with more detail on how reimbursement decisions are reached. Overall, POs felt their contributions to HTAs were under-valued. This research shows that patient engagement in HTAs is relatively low, even for large, well-resourced POs. Engagement could be improved if POs were provided with further supports including increased training, better communication channels with assessment bodies, and increased transparency regarding how patient submissions are weighted in the overall HTA submission process.

“Getting to the Table”: Changing Ideas about Public and Patient Involvement in Canadian Drug Assessment

Involving patients and the public in health policy may contribute to legitimacy and accountability. However, tensions may arise between paradigms of scientific-evidence-based decision making and new ideas valuing inclusivity and patient experience when evaluating and allocating health resources. This article asks whether 10 years of experience with public and patient involvement in Canadian drug assessment has affected participants' ideas about how it works. The author surveyed the ideas of participants in the drug assessment process (members of expert committees, officials, and patient groups) as described in reports and hearings in 2005, 2007, and 2012 and conducted interviews in 2014 and 2016. The author found some consensus across groups of participants regarding the broad goals of health technology assessment (HTA) and the validity of some form of public and patient involvement. There were also important areas of disagreement and uncertainty about how public and patient involvement should be used in drug assessment and how much impact it has on deliberations and recommendations. Overall, uncertainly about the specific role for public and patient involvement in HTA limits the potential for ideational change among participants. These findings have implications for evaluation of public and patient involvement, the way we understand ideational change, and practical questions of communicating health resource decisions.

OP28 Patient Involvement at AQuAS: Experiences And Reflections For Future

IntroductionAQuAS is gradually incorporating patient involvement in health technology assessment (HTA). We present two experiences conducted during 2018 and the different methods and approaches used. The aim is to reflect on learnings from those experiences to improve ways for increasing patient involvement with HTA at AQuAS.MethodsWe conducted two experiences using different quantitative and qualitative techniques (mix-methods approach). The first, a focus group discussion regarding the use of 3D-technologies for maxillofacial reconstruction with a selection of hospital patients that received maxillofacial reconstruction, which included the use of a quality-of-life retrospective self-assessment tool. The second, a sequence of email correspondence regarding cataract surgery technology (femtosecond laser-assisted cataract surgery (FLACS), in the context of an EUnetHTA Joint Assessment) with a patients’ association representative, to learn their opinion regarding the use of laser technology.ResultsMain learnings were: (1) patients and associations have different levels of knowledge and expertise to consider when planning an HTA; (2) sharing experience and knowledge among peers (i.e. focus group) proved to have a positive impact on patients and worked as a resource for some to improve knowledge on their condition; (3) critiques were received regarding a specific Patient Reported Experience template for HTA patient involvement (iv) quality of life retrospective self-assessment tool provided unexpected positive and negative results.ConclusionsRecent patient involvement in HTA at AQuAS proved to be useful to complement HTA reports. We believe that patients’ experiences and opinions can help decision-making regarding the use, disinvestment or incorporation of health technologies, contribute to the improvement of tools and survey accuracy and improve doctor-patient communication. Their involvement might be beneficial for them to gain more knowledge, share experiences, reflect on their health situation and improve communication with the professionals that treat them. Future patient-involvement in HTA is needed, e.g. considering the social perspective in economic evaluations or including patients in recommendation consensus panels.

OP81 Building Technical Capacity To Promote Patient Involvement In Health Technology Assessment

IntroductionIn December 2017, a patient involvement (PI) Interest Group was created in the Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS) Annual conference. It started as a voluntary group of health technology assessment (HTA) methodologists interested in PI. The objective of the Group is to promote and facilitate PI in HTA. With the support of the Spanish Ministry of Health and the RedETS Council the Interest Group grew to at least one member for each of the eight RedETS regional agencies and units. It currently has 22 members. The PI Interest Group works in periodic online meetings and an annual offline meeting to establish a space for experiences exchange and reach consensus on main issues regarding PI.MethodsRedETS published a strategy to facilitate effective and efficient PI in HTA processes in 2017. The long-term objective is to mainstream PI in all RedETS products. This strategy was built on a literature review and a qualitative study with semi-structured interviews. The interviews detected capacity building needs for technicians and methodologist in the network to be able to actively engage patients in HTA reports.ResultsSince the kick-off meeting the PI Interest Group has worked in a number of activities. The main lines of action since its creation were: (i) evaluation of PI process in RedETS HTA reports in 2017 and in current reports, (ii) discussion on main methodological and procedural aspects, and feasibility of different patient participation approaches, (iii) development of technical protocols and templates to facilitate PI, (iv) the creation/adaptation of educational materials for patients and (v) translation of the HTAi Glossary for patients to Spanish.ConclusionsPeer-to-peer learning processes can foster technical capacity of HTA methodologist in the Spanish HTA Network and may favor the implementation of the PI strategy.

VP37 Patient Involvement In EUnetHTA Assessments (Non-Pharma Technologies)

IntroductionPatients can provide valuable experience on living with diseases, health-related quality of life, various therapies and relevant outcomes. Their input and perspectives can be helpful in complementing health technology assessment (HTA) processes. The European Network for HTA (EUnetHTA), funded by the European Commission, aims to further advance and standardise patient involvement processes in order to add to the quality and applicability of HTAs and to allow capability building.MethodsDifferent methods for patient involvement in HTAs on non-pharmaceutical technologies were tested: Patient input templates (open questions sent to relevant patient organizations, or published on EUnetHTA website); scoping meeting with patients/patient representatives; one-on-one conversation and group conversation. Applied methods depended on the scope of the HTA and other factors like timelines of HTAs and burden of disease for patients.ResultsPatients were included in eight of sixteen HTAs on non-pharmaceutical technologies. Applied methods were: group conversation (n = 2), scoping meeting (n = 1), patient input templates (n = 4), one-on-one conversation (n = 2,) and other approach (i.e. written feedback on scope n= 2). In some HTAs more than one method was used. Main reasons for not including patients were inability to identify suitable patients or tight timelines. Patients' feedback on health-related quality of life and outcome measures proved most useful in the scoping phase.ConclusionsThe different approaches were useful for complementing HTA processes. Those need to be further tested and evaluated in order to formulate deeper understanding about the impact of patient involvement on HTA. Additionally, feedback from patients that were actively involved in the HTAs should be collected to further improve the involvement methods that should serve as basis for future recommendations post 2020.

Stories of Patient Involvement Impact in Health Technology Assessments: A Discussion Paper

As more health technology assessment (HTA) bodies seek to implement patient involvement, there is a desire to learn from other HTA bodies about their experiences and understand what approaches can be used and which ones make a real difference to HTA. This is difficult, as the impact of patient involvement in HTA is not well documented. This study aims to promote further discussion about the ways in which patient involvement can impact HTAs by studying stories of impact. In a multi-stakeholder workshop, experts leading patient involvement in four HTA bodies shared examples of HTAs where they believed patient involvement made a difference, then they reflected on these impact stories within the wider context of impact evaluation. The HTA bodies drew on patient input and patient-based evidence to inform their HTAs. The patient involvement was observed to elucidate patients' experiences, needs and preferences which, in turn, was observed to influence the HTA recommendations about optimal use of technologies, including taking account of issues for sub-groups, outcomes that matter to patients and educational needs. Personal stories of patient involvement may enable a wider understanding of different approaches to and impact of patient involvement. The examples relate to both patient input and patient-based evidence and highlight the role that patient involvement can play in reducing uncertainties and complementing the clinical and economic evidence in HTA. They suggest that impact can be seen in recommendations about how and when a technology is used.