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.

This study investigated how patient representatives have experienced their involvement in medicines appraisal and reimbursement processes with the Council for Choices in Health Care in Finland (COHERE) and the Pharmaceuticals Pricing Board (PPB) and how authorities perceive the role of patient organizations’ input.

Semi-structured thematic individual and pair interviews were conducted in 2021 with representatives (n = 14) of patient organizations and government officials (n = 7) of the Ministry of Social Affairs and Health. The interview data were analyzed using qualitative content analysis.

Patient representatives expressed their appreciation for the PPB and the COHERE in creating consultation processes and systematic models that support involvement. However, there were many challenges: patient representatives were uncertain about how their submissions were utilized in official processes and whether their opinions had any significance in decision-making. Patients or patient organizations lack representation in appraisal and decision-making bodies, and patient representatives felt that decision-making lacked transparency. The importance of patient involvement was highlighted by the authorities, but they also emphasized that the patient organizations’ contributions were complementary to the other materials. Submissions regarding the medications used to treat rare diseases and those with limited research evidence were considered particularly valuable. However, the submissions may not necessarily have a direct impact on decisions.

The interviews provided relevant input for the development of involvement processes at the PPB and COHERE. The interviews confirmed the need for increased transparency in the medicines assessment, appraisal, and decision-making procedures in Finland.

A literature review concerning the economic evaluation of telemonitoring was requested by the authority in charge of health evaluation in France, in a context of deployment of remote patient monitoring and identification of its financing. Due to the heterogeneity of existing telemonitoring solutions, it was necessary to stratify the evaluation according to patient involvement. Three levels of patient involvement are considered: weak (automated monitoring), medium (monitoring supported by a professional), and strong (active remote participation).

We performed a scoping review to provide a comprehensive overview of different systems of telemonitoring and their reported cost-effectiveness.

Following PRISMA-ScR guidelines, a search was performed in four databases: PubMed, MEDLINE, EMBASE, and Cochrane Library between January 1, 2013 and May 19, 2020. Remote patient monitoring should include the combination of three elements: a connected device, an organizational solution for data analysis and alert management, and a system allowing personalized interactions, and three degrees of involvement.

We identified 61 eligible studies among the 489 records identified. Heart failure remains the pathology most represented in the studies selected (n = 24). The cost-utility analysis was chosen in a preponderant way (n = 41). Forty-four studies (72 percent) reported that the intervention was expected cost-effective. Heterogeneity has been observed in the remote monitoring solutions but all systems are reported cost-effective. The small number of long-term studies does not allow conclusions to be drawn on the transposability.

Remote patient monitoring is reported to be cost-effective whatever the system and patient involvement.

Psychological therapies following an episode of self-harm should happen quickly to ensure patients receive the care they need and to reduce the likelihood of repetition.

We sought to explore patients' subjective experience of accessing psychological therapies following self-harm and their views on improving practice.

Between March and November 2019, we recruited 128 patients and 23 carers aged 18 years or over from 16 English mental health trusts, from community organisations and via social media. Thematic analyses were used to interpret the data.

Participants reported long waiting times, multiple failed promises and rejection when trying to access psychological therapies following self-harm. Poor communication and information provision contributed to uncertainty, worsening mental health and further self-harm. Other barriers included: lack of tailored interventions, stigmatising responses, use of exclusionary thresholds to access services, and punitive approaches to treating these patients. Participant recommendations to improve access to psychological therapies included: (a) the importance of compassionate and informed staff; (b) having timely access to aftercare from well-funded and well-resourced teams; (c) continuity of care, improved communication, and support during waiting times and while navigating the referral process; (d) greater information on the availability and benefits of psychological therapies; and (e) greater choice and flexibility over interventions.

Our findings identify long waiting times and inadequate service provision as barriers to high-quality and safe aftercare for patients who have self-harmed. Consistent with clinical guidelines, all patients should receive prompt aftercare and access to tailored psychological treatments following a self-harm episode.

Although patient and carer involvement in research is well-developed in many countries, this area has been largely overlooked in South-East European countries.

To explore experiences of patients participating in newly set up lived experience advisory panels (LEAPs) within a European Commission funded, large-scale, multi-country mental health research project that focused on improving treatment of individuals with psychosis.

Twenty-one mental health patients were individually interviewed across five countries: Bosnia and Herzegovina, Kosovo, Montenegro, North Macedonia and Serbia. Topic guides covered the experience of participating in LEAPs and their sustainability. Data were analysed by framework analysis.

Seven themes were identified about participating in LEAPs: predominantly positive evaluation, high levels of participant motivation, therapeutic benefits for participants, few challenges, various future perspectives, positive appraisal of the research project and mixed reflections on mental healthcare. Overall, patients’ experiences were positive and enabled them to feel empowered. Patients expressed interest in remaining involved in advisory panels. Additionally, they felt that they could potentially contribute to the work of non-government organisations.

This study is among the few studies exploring patient participation in research projects, and the first such study conducted in South-East European countries. Patients are highly motivated for this engagement, which has the potential to empower them to take on new social roles. Significant efforts at the national level are needed in each country, to make patient involvement in research standard practice.

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.

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.

In 2017, The French National Authority for Health (HAS) created an open, online, systematic contribution process to enable patient and consumer groups (PCGs) to contribute to health technology assessment (HTA) carried out to aid public authorities in reimbursement and pricing decision making.

This retrospective study analyzes how French PCGs contributed to the HTA process within the HAS for the first 2 years of this new mechanism.

PCG contributions received between 01 January 2017 and 31 December 2018 and the recording of deliberations leading to reports of the corresponding HTAs were included. Analysis grids were designed by the investigators with 5 rounds of refinement tests on 10 random PCG contributions and the reports. Systematic data extraction was then performed separately by two investigators. PCG answers to the open-question templates and the related final HTA report published by the HAS were analyzed.

Seventy-nine contributions from 44 PCGs were received and analyzed by the HAS for 78 out of the 592 HTAs performed for drugs or medical devices during the 2-year period. Twenty-five percent of the HTAs performed for drugs received at least one contribution. The contributions covered quality-of-life aspects, access to care, and personal and family impact. Membership and budget of the contributing PCGs varied greatly.

The experience gained in the first 2 years demonstrates the feasibility of the process and the fact that PCG contribution actually provides relevant input on the patient perspective for HTAs used for reimbursement decisions. The challenges identified on the side of PCGs were time constraints and human resources.

The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease.

(i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective.

All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis.

Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change.

The combination of methods to collect and integrate patients’ knowledge and patient associations’ perspectives helped develop a comprehensive understanding of a controversial object of evaluation.

There appears to be no research to date investigating patients’ preferences for sociocultural characteristics or behavioural qualities of psychiatrists. We aimed to assess which are most important to patients. Patients (132) in community mental health teams across two sites (East Cornwall, East London) completed a questionnaire ranking the importance of different sociocultural characteristics and behaviours of psychiatrists.

Patients cared more about age and gender than other characteristics. Four preferences (from a choice of ten) regarding behavioural qualities were clearly identified as important: explaining things clearly, dedication to personal treatment, being friendly and polite, and being up to date with medical knowledge.

Patients are fairly unconcerned about the age, gender, religion and social background of psychiatrists. Characteristics they care about most include communication skills, competence, dedication to personal treatment and friendliness. Explaining things clearly is particularly important. This indicates specific areas of improvement for training and further research.

To examine the association between physician–patient treatments shared decision making (SDM), patient satisfaction, and adoption of a new health technology.

A cross-sectional study was conducted from July 2016 to October 2016 in Fujian Province and Shanghai, in Eastern China. A total of 542 physicians and 619 patients in eleven hospitals were surveyed. Patients and their treating physicians completed self-reported questionnaires on patient–physician SDM, satisfaction with treatment decision making and adoption of a new health technology. Correlation analysis, multivariate logistic regression and multivariate linear regression were performed.

The majority (68.20 percent) of patients preferred SDM. Involvement of patients in SDM was positively associated with their satisfaction with treatment decision making (p < .001) and adoption of a new health technology (p < .05). Better concordance between their preference and actual SDM was positively associated with patients' adoption behavior (p < .05), but no statistically significant association was found between concordance and satisfaction.

SDM was the most important predictor of patients' satisfaction with decision making and adoption of a new health technology. Therefore, better communication between physicians and patients is recommended to improve their SDM, increase patient satisfaction and to assist with the adoption of new technologies. Training healthcare provider and teaching communication skills in working with patients in the initial stage of technology diffusion is required.

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.

The aim of this study was to develop a feasible and effective strategy to involve patients in the Spanish Network of Agencies of Health Technology Assessment (RedETS).

The framework for patient involvement (PI) in the assessment activities and processes of RedETS were developed through a research project that included: (i) a systematic search of the international literature describing a strategy and/or a methodology linking health technology assessment (HTA) and PI; (ii) a qualitative study through interviews with RedETS members to analyze the perceptions of PI among HTA managers in the Spanish context; (iii) a Delphi consultation with three large platforms of patients, carers and consumer organizations in Spain about their perspectives of PI; (iv) a consensus process with the members of the RedETS Governing Council to define the final strategy.

Three main themes were identified in the literature and Web site review: (i) PI methods for the different HTA phases; (ii) Participant definition and selection; (iii) Resources needed. A three-step implementation strategy was proposed: (i) short-term actions: piloting and testing patient participation in HTA and building patients' capacity; (ii) medium-term actions: broadening the participation of patients, and building internal capacity; (iii) long-term actions: consolidating and mainstreaming patient involvement

Patient participation can be incorporated into almost all the HTA phases and products with greater or lesser degrees of difficulty. However, a progressive implementation strategy is suggested for a feasible PI process.