Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

INTRODUCTION: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. METHODS: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. RESULTS: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. CONCLUSION: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

Patient engagement in care: A scoping review of recently validated tools assessing patients' and healthcare professionals' preferences and experience.

BACKGROUND: Patient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care. OBJECTIVE: Our scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care. SEARCH STRATEGY: A scoping review of recent peer-reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL-EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient-centredness, empowerment, shared decision-making and partnership in care. MAIN RESULTS: Of 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision-making and patient-centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient-centredness, empowerment and shared decision-making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase. DISCUSSION AND CONCLUSION: There is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time. PATIENT AND PUBLIC CONTRIBUTION: This manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript.

Assessing and promoting partnership between patients and health-care professionals: Co-construction of the CADICEE tool for patients and their relatives.

CONTEXT: Partnership between patients and health-care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. OBJECTIVE: To co-construct a tool for measuring the degree of partnership between patients and HCPs. DESIGN: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co-construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. RESULTS: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. CONCLUSIONS: The CADICEE tool is developed in co-construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health-care settings. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in determining the importance of constructing this questionnaire. They co-constructed it, pre-tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.

Teenager Perspectives on COVID Alert, a Digital Exposure Notification App in Canada.

PURPOSE: COVID Alert is an exposure notification app deployed in Canada to help limit the spread of COVID-19. METHODS: This was a cross-sectional survey conducted in Québec, Canada. The questionnaire was codesigned with patients and members of the public. It assessed the perspectives of teenagers aged 15-17 years old. RESULTS: Among 237 respondents, 27% had downloaded the COVID Alert app. Friends and relatives constituted the largest influence for app download. The most frequently reported concerns included threats to privacy, confidentiality, cybersecurity, and geolocalization. Among nonusers, having more social contacts and evidence demonstrating effectiveness would have motivated app download. Individual factors associated with download included high concern about the pandemic and high self-perceived app knowledge. DISCUSSION: Future digital health interventions should engage teenagers in developing tools that promote social acceptance and responsible use in this group.

Perceptions and engagement of patients with chronic conditions on the use of medical cannabis: a scoping review.

CONTEXT: Studies generally focus on one type of chronic condition and the effect of medical cannabis (MC) on symptoms; little is known about the perceptions and engagement of patients living with chronic conditions regarding the use of MC. OBJECTIVES: This scoping review aims to explore: (1) what are the dimensions addressed in studies on MC that deal with patients' perceptions of MC? and (2) how have patients been engaged in developing these studies and their methodologies? Through these objectives, we have identified areas for improving future research. METHODS: We searched five databases and applied exclusion criteria to select relevant articles. A thematic analysis approach was used to identify the main themes: (1) reasons to use, to stop using or not to use MC, (2) effects of MC on patients themselves and empowerment, (3) perspective and knowledge about MC, and (4) discussion with relatives and healthcare professionals. RESULTS: Of 53 articles, the main interest when assessing the perceptions of MC is to identify the reasons to use MC (n = 39), while few articles focused on the reasons leading to stop using MC (n = 13). The majority (85%) appraise the effects of MC as perceived by patients. Less than one third assessed patients' sense of empowerment. Articles determining the beliefs surrounding and knowledge of MC (n = 41) generally addressed the concerns about or the comfort level with respect to using MC. Only six articles assessed patients' stereotypes regarding cannabis. Concerns about stigma constituted the main topic while assessing relationships with relatives. Some articles included patients in the research, but none of them had co-created the data collection tool with patients. CONCLUSIONS: Our review outlined that few studies considered chronic diseases as a whole and that few patients are involved in the co-construction of data collection tools as well. There is an evidence gap concerning the results in terms of methodological quality when engaging patients in their design. Future research should evaluate why cannabis' effectiveness varies between patients, and how access affects the decision to use or not to use MC, particularly regarding the relationship between patients and healthcare providers. Future research should consider age and gender while assessing perceptions and should take into consideration the legislation status of cannabis as these factors could in fact shape perception. To reduce stigma and stereotypes about MC users, better quality and accessible information on MC should be disseminated.

Adapting and Evaluating an AI-Based Chatbot Through Patient and Stakeholder Engagement to Provide Information for Different Health Conditions: Master Protocol for an Adaptive Platform Trial (the MARVIN Chatbots Study).

BACKGROUND: Artificial intelligence (AI)-based chatbots could help address some of the challenges patients face in acquiring information essential to their self-health management, including unreliable sources and overburdened health care professionals. Research to ensure the proper design, implementation, and uptake of chatbots is imperative. Inclusive digital health research and responsible AI integration into health care require active and sustained patient and stakeholder engagement, yet corresponding activities and guidance are limited for this purpose. OBJECTIVE: In response, this manuscript presents a master protocol for the development, testing, and implementation of a chatbot family in partnership with stakeholders. This protocol aims to help efficiently translate an initial chatbot intervention (MARVIN) to multiple health domains and populations. METHODS: The MARVIN chatbots study has an adaptive platform trial design consisting of multiple parallel individual chatbot substudies with four common objectives: (1) co-construct a tailored AI chatbot for a specific health care setting, (2) assess its usability with a small sample of participants, (3) measure implementation outcomes (usability, acceptability, appropriateness, adoption, and fidelity) within a large sample, and (4) evaluate the impact of patient and stakeholder partnerships on chatbot development. For objective 1, a needs assessment will be conducted within the setting, involving four 2-hour focus groups with 5 participants each. Then, a co-construction design committee will be formed with patient partners, health care professionals, and researchers who will participate in 6 workshops for chatbot development, testing, and improvement. For objective 2, a total of 30 participants will interact with the prototype for 3 weeks and assess its usability through a survey and 3 focus groups. Positive usability outcomes will lead to the initiation of objective 3, whereby the public will be able to access the chatbot for a 12-month real-world implementation study using web-based questionnaires to measure usability, acceptability, and appropriateness for 150 participants and meta-use data to inform adoption and fidelity. After each objective, for objective 4, focus groups will be conducted with the design committee to better understand their perspectives on the engagement process. RESULTS: From July 2022 to October 2023, this master protocol led to four substudies conducted at the McGill University Health Centre or the Centre hospitalier de l'Université de Montréal (both in Montreal, Quebec, Canada): (1) MARVIN for HIV (large-scale implementation expected in mid-2024), (2) MARVIN-Pharma for community pharmacists providing HIV care (usability study planned for mid-2024), (3) MARVINA for breast cancer, and (4) MARVIN-CHAMP for pediatric infectious conditions (both in preparation, with development to begin in early 2024). CONCLUSIONS: This master protocol offers an approach to chatbot development in partnership with patients and health care professionals that includes a comprehensive assessment of implementation outcomes. It also contributes to best practice recommendations for patient and stakeholder engagement in digital health research. TRIAL REGISTRATION: ClinicalTrials.gov NCT05789901; https://classic.clinicaltrials.gov/ct2/show/NCT05789901. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/54668.

Patient and family engagement in infection prevention in the context of the COVID-19 pandemic: defining a consensus framework using the Q methodology - NOSO-COVID study protocol.

INTRODUCTION: Healthcare-associated infections are an important patient safety concern, especially in the context of the COVID-19 pandemic. Infection prevention and control implemented in healthcare settings are largely focused on the practices of healthcare professionals. Patient and family engagement is also recognised as an important patient safety strategy. The extent to which patients and families can be engaged, their specific roles and the strategies that support their engagement in infection prevention remain unclear. The overarching objective of the proposed study is to explore how patients and families can effectively be engaged in infection prevention by developing a consensus framework with key stakeholders. DESIGN AND METHODS: The proposed study is based on a cross-sectional exploratory study at one of the largest university hospitals in North America (Montreal, Canada). The targeted population is all healthcare professionals, managers and other non-clinical staff members who work on clinical units, and the in-patients and their families. The study is based on Q methodology that takes advantage of both quantitative and qualitative methods to identify the consensus among the various stakeholders. This exploratory Q research approach will provide a structured way to elicit the stakeholders' perspectives on patient and family engagement in infection prevention. ETHICS AND DISSEMINATION: The research ethics board approved this study. The research team plans to disseminate the findings through different channels of communication targeting healthcare professionals, managers in healthcare settings, and patients and family caregivers. The findings will also be disseminated through peer-reviewed journals in healthcare management and in quality and safety improvement.

Social Robot Interventions in Mental Health Care and Their Outcomes, Barriers, and Facilitators: Scoping Review.

BACKGROUND: The use of social robots as innovative therapeutic tools has been increasingly explored in recent years in an effort to address the growing need for alternative intervention modalities in mental health care. OBJECTIVE: The aim of this scoping review was to identify and describe social robot interventions in mental health facilities and to highlight their outcomes as well as the barriers and facilitators to their implementation. METHODS: A scoping review of the literature published since 2015 was conducted using the Arksey and O'Malley's framework. The MEDLINE, Embase, Cochrane Central Register of Controlled Trials, and PsycINFO databases were searched, and 2239 papers were retrieved. The papers included were primary empirical studies published in peer-reviewed literature. Eligible studies were set in mental health facilities and they included participants with a known mental health disorder. The methodological quality of the included papers was also assessed using the Mixed Methods Appraisal Tool. RESULTS: A total of 30 papers met the eligibility criteria for this review. Studies involved participants with dementia, cognitive impairment, schizophrenia, depression, autism spectrum disorder, attention-deficit hyperactivity disorder, and an intellectual disability. The outcomes studied included engagement, social interaction, emotional state, agitation, behavior, and quality of life. CONCLUSIONS: The methodological weaknesses of the studies conducted this far and the lack of diversity in the conditions studied limit the generalizability of the results. However, despite the presence of certain barriers to their implementation (eg, technical problems, unsuitable environment, staff resistance), social robot interventions generally show positive effects on patients with mental health disorders. Studies of stronger methodological quality are needed to further understand the benefits and the place of social robots in mental health care.

Fantastic perspectives and where to find them: involving patients and citizens in digital health research.

BACKGROUND: Digital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process. Their contribution supports the acceptability of such apps, by providing upstream evidence on incentives and potential barriers that are most relevant to users. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to better integrate public perspectives on these apps. In this paper, we present the co-construction process that led to the survey instrument used in the DIGICIT project and the interpretation of its results. This approach promotes public participation in research on contact tracing and exposure notification apps, as well as related digital health applications. OBJECTIVES: This article has three objectives: (1) describe the methodological process to co-construct a questionnaire and interpret the survey results with patients and citizens, (2) assess their experiences regarding this methodology, and (3) propose best practices for their involvement in digital health research. METHODS: The DIGICIT project was developed in four steps: (1) creation of the advisory committee composed of patients and citizens, (2) co-construction of a questionnaire, (3) interpretation of survey results, and (4) assessment of the experience of committee participants. RESULTS: Of the 25 applications received for participation in the advisory committee, we selected 12 people based on pre-established diversity criteria. Participants initially generated 84 survey questions in the first co-construction meeting, and eventually selected 36 in the final version. Participants made more than 20 recommendations when interpreting survey results and suggested carrying out focus groups with marginalized populations to increase representativity. They appreciated their inclusion early in the research process, being listened to and respected, the collective intelligence, and the method used for integrating their suggestions. They suggested that the study objectives and roles be better defined, that more time in the brainstorming sessions be allowed, and that discussion outside of meetings be encouraged. CONCLUSION: Having patients and citizens actively participating in this research constitutes the main methodological strength. They enriched the study from start to finish, and recommended the addition of focus groups to seek the perspective of marginalized groups that are typically under-represented from digital health research. Clear communication of the project objectives, good organization in meetings, and continuous evaluation from participants allow best practices to be achieved for patients' and citizens' involvement in digital health research. Co-construction in research generates critical study design ideas through collective intelligence. This methodology can be used in various clinical contexts and different healthcare settings.

COVID Alert is a mobile application (app) that was developed created to help limit the spread of COVID-19 in Canada. Although promising, these apps have not been widely used by the population, in part due to limited citizen engagement in their design. The DIGICIT project (DIGITal CITizenship) was carried out in partnership with citizens, including patients, to gather public perspective in Quebec, Canada about the COVID Alert app. The purpose of this article is to describe our method of constructing a survey questionnaire with patients and citizens. We have created an advisory committee of 12 participants. Along with the research team, they created a 36-question survey. They also suggested doing focus groups to add data to the survey by reaching marginalized groups that are traditionally excluded from digital health research. We also wanted to know the experience of the participants being included in this study. We conducted interviews and did a small survey with them. They appreciated being included from the beginning of the research, being listened to, and being respected. They appreciated the creativity of the group and the brainstorming sessions. However, they would have liked the tasks to be clearer from the start. They also would have preferred to have more time in the brainstorming sessions to create the survey questions, and to have discussions outside of the meetings. The inclusion of patients and citizens is the main strength of this project. To improve their integration in health research, there needs to be good communication of project objectives. Also, meetings must be well organized, and participants must be able to evaluate their experience.

Public Perspectives on Exposure Notification Apps: A Patient and Citizen Co-Designed Study.

Canada deployed a digital exposure notification app (COVID Alert) as a strategy to support manual contact tracing. Our aims are to (1) assess the use, knowledge, and concerns of the COVID Alert app, (2) identify predictors of app downloads, and (3) develop strategies to promote social acceptability. A 36-item questionnaire was co-designed by 12 citizens and patients partnered with 16 academic researchers and was distributed in the province of Québec, Canada, from May 27 to 28 June 2021. Of 959 respondents, 43% had downloaded the app. Messaging from government sources constituted the largest influence on app download. Infrequent social contacts and perceived app inefficacy were the main reasons not to download the app. Cybersecurity, data confidentiality, loss of privacy, and geolocation were the most frequent concerns. Nearly half of the respondents inaccurately believed that the app used geolocation. Most respondents supported citizen involvement in app development. The identified predictors for app uptake included nine characteristics. In conclusion, this project highlights four key themes on how to promote the social acceptability of such tools: (1) improved communication and explanation of key app characteristics, (2) design features that incentivize adoption, (3) inclusive socio-technical features, and (4) upstream public partnership in development and deployment.

Risk Perceptions, Knowledge and Behaviors of General and High-Risk Adult Populations Towards COVID-19: A Systematic Scoping Review.

Objectives: The COVID-19 pandemic represents a major crisis for governments and populations. The public's risk perceptions, knowledge, and behaviors are key factors that play a vital role in the transmission of infectious diseases. Our scoping review aims to map the early evidence on risk perceptions, knowledge, and behaviors of general and high-risk adult populations towards COVID-19. Methods: A systematic scoping review was conducted of peer-reviewed articles in five databases on studies conducted during the early stages of COVID-19. Thirty-one studies meeting the inclusion criteria were appraised and analyzed. Results: The levels of risk perceptions, knowledge, and behaviors towards COVID-19 were moderate to high in both general and high-risk adult populations. Adults were knowledgeable about preventive behaviors. Our review identified hand-washing and avoiding crowded places as dominant preventive behaviors. Being a female, older, more educated, and living in urban areas was associated with better knowledge of COVID-19 and appropriate preventive behaviors. Conclusion: This review offers a first understanding of risk perceptions, knowledge and behaviors of adult populations during the early stages of the COVID-19 pandemic.

Considerations for the Design and Implementation of COVID-19 Contact Tracing Apps: Scoping Review.

BACKGROUND: Given the magnitude and speed of SARS-CoV-2 transmission, achieving timely and effective manual contact tracing has been a challenging task. Early in the pandemic, contact tracing apps generated substantial enthusiasm due to their potential for automating tracing and reducing transmission rates while enabling targeted confinement strategies. However, although surveys demonstrate public interest in using such apps, their actual uptake remains limited. Their social acceptability is challenged by issues around privacy, fairness, and effectiveness, among other concerns. OBJECTIVE: This study aims to examine the extent to which design and implementation considerations for contact tracing apps are detailed in the available literature, focusing on aspects related to participatory and responsible eHealth innovation, and synthesize recommendations that support the development of successful COVID-19 contact tracing apps and related eHealth technologies. METHODS: Searches were performed on five databases, and articles were selected based on eligibility criteria. Papers pertaining to the design, implementation, or acceptability of contact tracing apps were included. Articles published since 2019, written in English or French, and for which the full articles were available were considered eligible for analysis. To assess the scope of the knowledge found in the current literature, we used three complementary frameworks: (1) the Holistic Framework to Improve the Uptake and Impact of eHealth Technologies, (2) the Montreal model, and (3) the Responsible Innovation in Health Assessment Tool. RESULTS: A total of 63 articles qualified for the final analysis. Less than half of the selected articles cited the need for a participatory process (n=25, 40%), which nonetheless was the most frequently referenced item of the Framework to Improve the Uptake and Impact of eHealth Technologies. Regarding the Montreal model, stakeholder consultation was the most frequently described level of engagement in the development of contact tracing apps (n=24, 38%), while collaboration and partnership were cited the least (n=2, 3%). As for the Responsible Innovation in Health framework, all the articles (n=63, 100%) addressed population health, whereas only 2% (n=1) covered environmental considerations. CONCLUSIONS: Most studies lacked fundamental aspects of eHealth development and implementation. Our results demonstrate that stakeholders of COVID-19 contact tracing apps lack important information to be able to critically appraise this eHealth innovation. This may have contributed to the modest uptake of contact tracing apps worldwide. We make evidence-informed recommendations regarding data management, communication, stakeholder engagement, user experience, and implementation strategies for the successful and responsible development of contact tracing apps.