Meaningful Patient Involvement Research Articles

Building research capacity and capability to enhance the quality of living and dying addressing advancing frailty through integrated care: the ALLIANCE partnership.

Frailty affects around 10% of people aged over 65 years, increasing to 65% of those over 90 years. This number is increasing. Older people with frailty are projected to become the largest future users of care services as they near end of life. Living with frailty increases vulnerability to sudden deterioration, fluctuating capacity and mortality risk. This leads to complex needs, requiring integrated care, and an approach orientated towards living with, as well as dying from, advancing frailty. However, accessing care in a timely manner can be difficult. To develop a sustainable, cross-sectoral partnership to: identify priorities to improve integrated care delivery, and care transitions, for older people with advancing frailty develop organisations in which to conduct research submit study proposal(s) for funding. To establish Partnership infrastructure and identify key contacts across palliative and end-of-life care. To understand the strengths, weaknesses, barriers and enablers of research readiness and clinical services for people with advancing frailty. To support provider services to become research ready. To establish Partnership-wide research questions and develop research proposals. The Partnership brought together experts, by profession or experience (n = 244), across specialist palliative and geriatric care and local government, to improve the delivery of integrated care for older people with advancing frailty as they near end of life. Members included older people with frailty, unpaid carers, health, social and voluntary care professionals and academics, across the East Midlands, South East England and South West London. A survey of key contacts (n = 76) mapped and scoped the Partnership's strengths, weaknesses, barriers and enablers of services for people with advancing frailty, and service providers' research readiness. Forty-six key contacts responded. Most worked in the East Midlands (59%), in health care (70%) and in the community (58%). Survey findings were used to develop a service framework and to create a short list of potential research questions. Questions were refined and prioritised through coproduction with frail older people (n = 21), unpaid carer representatives (n = 7), health, social and voluntary care professionals (n = 11) and care home representatives (n = 3). The question chosen for bid development focused on ensuring what matters most to older people with frailty informs service development. This bid is currently being written. Partnership members were also supported to develop research readiness and enhance meaningful patient and public involvement by the development and curation of multiple resources. This work was challenging. The Partnership enabled the collaboration of diverse stakeholders and fostered opportunities to improve end-of-life care for older people with advancing frailty. However, the fluidity of the workforce, lack of finance to buy-out key contacts' time, limited service integration across sectors, lack of common language and concepts across sectors, need to build research understanding and readiness, and minimal evidence of engaging frail older people approaching end of life in determining service provision and research, made achieving the initial goals overly ambitious. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty, and is currently coproducing a clinically applied, translational research proposal. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135262.

Enhancing patient-oriented research training: participant perceptions of an online course

BackgroundPatient-oriented research is now widely regarded as key to improving health systems and patient outcomes. This shift toward meaningful patient involvement in health research has sparked a growing interest in patient-oriented research training across Canada. Yet some barriers to participation, including distance and scheduling constraints, may impede the provision of in-person patient-oriented research training. Virtual course delivery options may help surmount those barriers, as well as offer unique pedagogical advantages.ObjectiveTo help increase patient-oriented research training uptake, the research team adapted the Canadian Institutes of Health Research’s (CIHR) Strategy for Patient-Oriented Research’s Foundations for Patient-Oriented Research course to a virtual format. The course consists of three modules, which focus respectively on patient-oriented research, health research methods, and teamwork skills. The current evaluation of this virtual delivery examines how a diverse set of participants received the online course.MethodsCourse participants from a variety of professional backgrounds, including researchers, patients, clinicians, and policy decision-makers, were recruited from across Canada to participate in the adapted course. Participant and facilitator feedback was solicited via online surveys that were distributed shortly after the delivery of each module.ResultsOver the span of the current project, the online course was delivered seven times across Canada. A total of 189 learners and 12 facilitators participated in the course. We received 89 completed feedback surveys in total. These included a total of 78 responses from learners, with 22 on Module 1, 32 on Module 2, and 24 on Module 3, in addition to 11 responses from facilitators. Overall, participants and facilitators were very satisfied with the course, indicating a successful adaptation from traditional to online delivery. Survey respondents were especially pleased with the course’s co-learning elements, which exposed them to fresh perspectives and real patient voices, as well as ample opportunity for discussion. Some participants offered recommendations for minor course revisions. Future iterations of the course will reflect participant and facilitator feedback to enhance accessibility via minor changes to course format (e.g., shorter live sessions), content (e.g., more concrete examples), and workload (e.g., reduced pre-work requirements).ConclusionsSustainable and effective health care depends on health research that includes active partnerships across diverse populations. These collaborative relationships are fostered by strong capacity in patient-oriented research, which in turn hinges on widely accessible training opportunities. This online course overcomes common barriers to face-to-face training and offers the accessible, inclusive training environment required for sustained progress in patient-oriented research.

Exploring the role of therapeutic alliance and biobehavioural synchrony in musculoskeletal care: Insights from a qualitative study

BackgroundPerson-centred care underscores the therapeutic alliance (TA) as fundamental, fostering positive treatment outcomes through collaborative patient-clinician interactions. Biobehavioural synchrony within the TA, essential for effective care, reflects an adaptive process where organisms align responses during interactions. Enactivism and active inference provide profound insights into human perception, reshaping musculoskeletal care understanding. Touch and verbal communication, integral to the TA, foster synchrony and alignment of personal beliefs. AimThis study aimed to identify the tools used by manual therapists in musculoskeletal care to establish a TA with patients. Furthermore, it endeavours to evaluate the alignment of these strategies with current literature and their correlation with biobehavioural synchrony, enactivism, and the role of touch in active inference. MethodsThe methodology followed rigorous qualitative research principles, particularly Grounded Theory and interpretative-constructivist principles, conducting eleven semi-structured interviews with open-ended questions. ResultsThe core category identified in the study is elucidated as follows: "Interwoven Connection: The Fabric of Therapeutic Synchrony." The interviews unveiled three main categories, each comprising sub-categories: (1) Creating a meaningful dialogue; (2) Promoting active patient participation; (3) Synchronisation. ConclusionFostering meaningful dialogue, patient involvement, and therapeutic synchrony is crucial for a robust therapeutic alliance in musculoskeletal care. This underscores the importance of establishing a deep connection between clinicians and patients, central to effective person-centred care. Clinicians must prioritise two-way communication, empathy, and patient collaboration in defining personalised goals. Emphasizing touch and seeking patient feedback are also pivotal. Further research is needed to explore these elements and their impact.

Patient and public involvement and engagement in the development of innovative patient-centric early phase dose-finding trial designs

BackgroundIn light of the FDA’s Project Optimus initiative, there is fresh interest in leveraging Patient-reported Outcome (PRO) data to enhance the assessment of tolerability for investigational therapies within early phase dose-finding oncology trials. Typically, dose escalation in most trial designs is solely reliant on clinician assessed adverse events. Research has shown a disparity between patients and clinicians when assessing whether an investigational therapy is tolerable, leading to the recommendation of potentially intolerable doses for further investigation in subsequent trials.It is also increasingly recognized that patient and public involvement and engagement (PPIE) plays a pivotal role in enriching trial design and conduct. However, to our knowledge, no PPIE has explored the optimal integration of PROs in the development of advanced statistical trial designs within early phase dose-finding oncology trials.MethodsA virtual PPIE session was held with nine participants on 18th October 2023 to discuss the incorporation of PROs within a dose-finding trial design. This cross disciplinary session was developed and led by a team of statisticians, clinical specialists, qualitative experts, and trial methodologists. Following the session, in-depth perspectives were provided by two patient advocates who actively engaged in the PPIE session. We discuss the importance of PPIE in shaping advanced dose-finding trial designs, share insights from patients on integrating PROs to inform treatment tolerability, and present a template for meaningful patient involvement in trial design development.ResultsParticipants generally supported the introduction of PROs within dose-finding trials but showed some apprehensiveness as to how PROs may reduce the size of the recommended dose (and potentially efficacious effect). Some participants shared that they may be reluctant to record the real severity of their symptoms via PROs if it would mean that they would have to discontinue treatment. They discussed that PROs could be used to assess tolerability rather than toxicity of a dose.ConclusionsAmplifying patient voice in the development of patient-centric dose-finding trial designs is now essential. This paper offers an exemplary illustration of how trialists and methodologists can effectively incorporate patient voice in the future development of advanced dose-finding trial designs.

BIOETHICS AND PATIENT INVOLVEMENT IN MEDICAL DECISION-MAKING: CHALLENGES AND ETHICAL IMPLICATIONS IN CLINICAL PRACTICE

Background Patient involvement in medical decision-making has become an integral element in contemporary healthcare, affirming the rights and autonomy of patients in their care processes. This review presents an in-depth study concerning the issue of patient involvement in medical decision-making from a bioethical perspective, as well as exploring the challenges and ethical implications that arise in clinical practice. Methods A literature review method is used in this study, encompassing various literary sources that detail bioethical principles such as patient autonomy, justice, beneficence, and non-maleficence in the context of medical decision-making. Additionally, this study seeks a profound understanding of how clinical practices and health policies influence patient involvement and present specific ethical challenges. Result The findings of this literature review highlight the crucial role of bioethics in shaping more ethical practices in medical decision-making and identify key issues that need attention, such as inequality in access and information, value conflicts between patients and healthcare providers, and the need to focus on the best interests of the patient. Conclusion By understanding these ethical challenges and implications, we can better develop guidelines and policies that support meaningful and ethical patient involvement in clinical practice. Thus, this research contributes to the development of healthcare that respects bioethical values as well as the rights and needs of patients.

Patient engagement in designing and publishing research in prostate cancer: a scoping review.

Patients with cancer have the unique ability of being able to offer valuable insights into how cancer therapeutics may impact the overall patient experience and improve clinical outcomes. Patient engagement could therefore contribute to tailoring treatment strategies and research design according to patient needs. This study evaluated patient engagement in prostate cancer research by identifying patient input in the prostate cancer literature. We performed a keyword cluster analysis of articles from multiple databases and congresses in which patients provided input on disease management or were involved in study design, manuscript authorship or presentation of results (patient voice). In total, 112 studies were included. Patients were involved in the design of 11studies and were credited as authors in four studies. This review suggests a lack of meaningful patient involvement in prostate cancer research and publications.

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.

Characterising meaningful patient and public involvement in the pharmaceutical industry research setting: a retrospective quality assessment

ObjectivesPatient and public involvement (PPI) in clinical research has a well-established infrastructure in the UK, and while there has been good progress within pharmaceutical-industry-sponsored research, further improvements are still needed....

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.

Better post-operative prediction and management of chronic pain in adults after total knee replacement: the multidisciplinary STAR research programme including RCT

Better post-operative prediction and management of chronic pain in adults after total knee replacement: the multidisciplinary STAR research programme including RCT

Participating in innovative medicines initiative funded neurodegenerative disorder projects-An impact analysis conducted as part of the NEURONET project.

The European Commission's Innovative Medicines Initiative (IMI) has funded many projects focusing on neurodegenerative disorders (ND) that aimed to improve the diagnosis, prevention, treatment and understanding of NDs. To facilitate collaboration across this project portfolio, the IMI funded the "NEURONET" project between March 2019 and August 2022 with the aim of connecting these projects and promoting synergies, enhancing the visibility of their findings, understanding the impact of the IMI funding and identifying research gaps that warrant more/new funding. The IMI ND portfolio currently includes 20 projects consisting of 270 partner organizations across 25 countries. The NEURONET project conducted an impact analysis to assess the scientific and socio-economic impact of the IMI ND portfolio. This was to better understand the perceived areas of impact from those directly involved in the projects. The impact analysis was conducted in two stages: an initial stage developed the scope of the project, defined the impact indicators and measures to be used. A second stage designed and administered the survey amongst partners from European Federation of Pharmaceutical Industries and Associations (EFPIA) organizations and other partners (hereafter, referred to as "non-EFPIA" organizations). Responses were analyzed according to areas of impact: organizational, economic, capacity building, collaborations and networking, individual, scientific, policy, patient, societal and public health impact. Involvement in the IMI ND projects led to organizational impact, and increased networking, collaboration and partnerships. The key perceived disadvantage to project participation was the administrative burden. These results were true for both EFPIA and non-EFPIA respondents. The impact for individual, policy, patients and public health was less clear with people reporting both high and low impact. Overall, there was broad alignment between EFPIA and non-EFPIA participants' responses apart from for awareness of project assets, as part of scientific impact, which appeared to be slightly higher among non-EFPIA respondents. These results identified clear areas of impact and those that require improvement. Areas to focus on include promoting asset awareness, establishing the impact of the IMI ND projects on research and development, ensuring meaningful patient involvement in these public-private partnership projects and reducing the administrative burden associated with participation in them.

Long Covid: A call for global action

AbstractThe COVID‐19 pandemic has resulted in another global health crisis with millions of individuals with Long Covid experiencing disability, worse health‐related quality of life, and productivity and income losses. Despite its impact on population health outcomes, health systems, and the economy, there remains a need for a global consensus on its standard definition, diagnostic approaches, and treatment plans to manage symptoms. In many low‐ and middle‐income countries (LMICs), there are limited published estimates on Long Covid, limited studies on its diagnostics and therapeutics, and limited media and news coverage. We advocate for a global action plan and necessary investments on Long Covid research and treatment, meaningful involvement of patients and cooperation between high‐income countries and LMICs, stronger and more effective public health communication surrounding the risks of Long Covid, and support toward financial risk protection as advocated by Universal Health Care.

Supporting health researchers to realize meaningful patient involvement in research: Exploring researchers’ experiences and needs

Abstract Involving patients in health research requires a new way of working for all stakeholders involved, including researchers. This research aimed (1) to gain deeper insight into the experiences and needs of researchers regarding meaningful patient involvement and (2) to incorporate these insights into an online tool. This was done in a transdisciplinary research process, including three focus group discussions and three test sessions. We used the Social Cognitive Theory in the analysis process to reflect on how the tool addresses the complex personal, behavioural, and environmental factors that shape researchers’ experiences and needs. Identified factors were categorized into three themes: added value, perceived difficulty and patient-researcher role patterns. A tool was developed that addresses these factors, aiming to stimulate meaningful involvement by encouraging (self)reflection, experimentation, and learning-by-doing. It provides one element in a bigger systems approach to further stimulate patient involvement.

Meaningful patient and public involvement in digital health innovation, implementation and evaluation: A systematic review.

IntroductionThe importance of meaningfully involving patients and the public in digital health innovation is widely acknowledged, but often poorly understood. This review, therefore, sought to explore how patients and the public are involved in digital health innovation and to identify factors that support and inhibit meaningful patient and public involvement (PPI) in digital health innovation, implementation and evaluation.MethodsSearches were undertaken from 2010 to July 2020 in the electronic databases MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and ACM Digital Library. Grey literature searches were also undertaken using the Patient Experience Library database and Google Scholar.ResultsOf the 10,540 articles identified, 433 were included. The majority of included articles were published in the United States, United Kingdom, Canada and Australia, with representation from 42 countries highlighting the international relevance of PPI in digital health. 112 topic areas where PPI had reportedly taken place were identified. Areas most often described included cancer (n = 50), mental health (n = 43), diabetes (n = 26) and long‐term conditions (n = 19). Interestingly, over 133 terms were used to describe PPI; few were explicitly defined. Patients were often most involved in the final, passive stages of an innovation journey, for example, usability testing, where the ability to proactively influence change was severely limited. Common barriers to achieving meaningful PPI included data privacy and security concerns, not involving patients early enough and lack of trust. Suggested enablers were often designed to counteract such challenges.ConclusionsPPI is largely viewed as valuable and essential in digital health innovation, but rarely practised. Several barriers exist for both innovators and patients, which currently limits the quality, frequency and duration of PPI in digital health innovation, although improvements have been made in the past decade. Some reported barriers and enablers such as the importance of data privacy and security appear to be unique to PPI in digital innovation. Greater efforts should be made to support innovators and patients to become meaningfully involved in digital health innovations from the outset, given its reported benefits and impacts. Stakeholder consensus on the principles that underpin meaningful PPI in digital health innovation would be helpful in providing evidence‐based guidance on how to achieve this.Patient or Public ContributionThis review has received extensive patient and public contributions with a representative from the Patient Experience Library involved throughout the review's conception, from design (including suggested revisions to the search strategy) through to article production and dissemination. Other areas of patient and public contributor involvement include contributing to the inductive thematic analysis process, refining the thematic framework and finalizing theme wording, helping to ensure relevance, value and meaning from a patient perspective. Findings from this review have also been presented to a variety of stakeholders including patients, patient advocates and clinicians through a series of focus groups and webinars. Given their extensive involvement, the representative from the Patient Experience Library is rightly included as an author of this review.

Advocating active and meaningful involvement of patients in the delivery of medical education

The onus of knowledge acquisition and learning has demonstrated a paradigm shift in the field of medical education. The present review has been carried out to explore and understand the role of patient involvement in the training of medical students. An extensive search of all materials related to the topic was carried out in the PubMed search engine, and a total of 26 articles were selected based on the suitability with the current review objectives. The involvement of patients in medical education has been linked with a wide range of proven benefits and learning progression. The patients can discharge multiple roles, namely a teacher, developing curriculum, assessor, and someone who can select students for the course. The role of actively involving patients in the teaching process is bound to have some challenges and barriers considering the different aspects in heterogeneous settings. The ideal approach to involve patients in medical education has to start with sensitizing the faculty members and the medical students about the benefits that can be derived out of such clinical interactions. The successful implementation will essentially require adequate resource support and faculty involvement. To conclude, the patient involvement in medical training is not a new practice, but the ground reality is that we are falling short to optimize the benefits of the overall practice. The need of the hour is to adopt a systematic approach and structure the overall program, so that we can derive tangible benefits out of the same and prepare the future generation of doctors in the delivery of patient-centered care.

A framework for action to improve patient and public involvement in health technology assessment.

Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for "social participation." This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA. This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework. According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies. Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

A Goal-Directed Model of Collaborative Decision Making in Hospice and Palliative Care.

Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities for exploration of the very values, preferences, and goals that ideally inform serious illness care. Researchers who develop and test interventions to address these barriers have noted the complementary utility of two existing models in supporting collaborative relationships between hospice and palliative care teams and the patients and families they serve: (1) the social problem-solving model, and (2) the integrative model of shared decision making in medical encounters. This paper describes the integration and extension of these two highly synergistic models, resulting in a goal-directed model of collaborative decision making in hospice and palliative care. Directions for practice innovation and research informed by the model are discussed at length.

Partnering to Increase Colorectal Cancer Screening: Perspectives of Community Advisory Board Members.

The Patient-Centered Outcomes Research Institute (PCORI) defines engagement in research as the meaningful involvement of patients, caregivers, clinicians, insurers, and others throughout the entire research process-from planning to conducting the study to disseminating study results. The purposes of this paper are to (a) describe methods used to engage community members across the various phases of a PCORI-funded comparative effectiveness trial to increase colorectal cancer screening; and (b) report results of qualitative and quantitative evaluations of community advisory board members' experiences on this project. Decisions to join and stay engaged with the study included feeling valued and appreciated, being compensated, the opportunity to contribute to research based on their skills and expertise, and being committed to colon cancer prevention efforts. Challenges identified by advisory board members included the significant time commitment, transportation, and meeting location. Lessons learned and guidance for researchers committed to patient and community engagement are described.

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.

Strengthening patient outcome evidence in health technology assessment: a coproduction approach.

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.