1 Introduction

In the field of medical research, Patient Engagement in Research (PER) has emerged as a highly scrutinized topic. PER refers to active, meaningful and collaborative interactions between patients and researchers at all stages of the research process. The formulation of research decisions involves contributions from patients as partners, requiring researchers to fully acknowledge their specific experiences, values and professional knowledge [1]. The application of PER has positive effects on research outcomes, researchers and participants alike. PER ensures the clinical value of research topics, transparency and legitimacy in the research process, and contributes to the translation of research results into practical applications [2]. For researchers, it enhances insights and understanding of the research field, reduces participant attrition, improves data collection tools and enhances research efficiency, demonstrating extensive practical value [3]. For patients, it promotes their understanding of more information about diseases and treatments, improves the trust relationship between researchers and patients, and has been reported to enhance the quality of life for patients in certain disease areas [3].

In nations like the United States and Canada, associations or research institutes dedicated to PER have been established to provide financial support for the development and application of PER, and have accumulated a wealth of experience and demonstrated successful cases [4-6]. Researchers have developed specialized frameworks that aim to direct the practice of patient-engaged research and encourage cooperation between patients and researchers [7-9]. Despite the increasing recognition of the importance of patient engagement in research, there is currently a notable absence of research or practical experience reports in this field in China.

The promotion and application of PER face several barriers, especially when introduced in a new setting [10]. When bringing PER into China, it is essential to acknowledge significant differences in social culture, healthcare environments, and research contexts compared to other countries. These disparities may influence patients' attitudes toward PER and present distinctive barriers in implementing PER, necessitating the development of specific strategies to facilitate PER [11]. Therefore, gaining the perspectives of Chinese researchers on barriers and strategies in PER is of great significance. They possess direct patient interaction experience and an extensive understanding of China's culture and environment. Addressing challenges in PER is primarily the responsibility of researchers, making it logical and valuable to derive strategies from their perspective.

The objective of this study is to implement a qualitative research methodology to gain insight into Chinese researchers' perspectives on potential barriers to conducting PER in China and explore methods to facilitate PER, based on their experiences in previous clinical research. This study is expected to provide guidance for future PER in China and promote a more valuable role for patients in medical research and better medical outcomes.

2 Materials and Methods

3 Results

A total of 13 participants were included, with demographic information as shown in Table 1. Five participants (D1–D5) were from the medical research field, and eight (N1–N8) were from the nursing research field. Five main themes and 15 sub-themes were extracted (Table 2). Relationships between topics were mapped (Figure 1).

4 Discussions

In this study, participates indicated that the principles of patient selection were influenced by the topic and design of the study. When the study focuses on physiologic parameters (e.g., blood pressure, blood glucose, etc.), these indicators are usually not affected by factors such as level of education, free time, etc. Whereas, when studies have addressed cognitive or psychologically related factors (e.g., satisfaction, expectations, health literacy, etc.), which may be perceived differently by patients with different demographics, the representation of diverse patients should be given more consideration. Interviewees referred to the significance of patient diversity, following the concept of PER, the inclusion of patients aims to capture a broader range of voices. Only by fully considering this diversity can the comprehensiveness, reliability and effectiveness of the research be ensured [15]. However, respondents also mentioned that certain demographics might encounter significant barriers in PER. Previous studies have reported fewer barriers in engaging certain patient characteristics in research, such as younger age, higher education, extroverted personality and patients with more available time [16, 17]. An interview with homebound older adults and caregivers in the United States indicated that barriers to participation in research existed in addition to time constraints and caregiving responsibilities, personal physical barriers and also fear of lack of contributing skills or expertise [18]. Therefore, the fact that there are greater barriers to implementing PER in some specific groups of patients may exist, which poses a challenge to achieving population diversity.

Given the extremely limited experience of Chinese researchers in PER at present and the lack of corresponding policies, a reasonable strategy for initial attempts is to reduce the difficulty of implementation. Without compromising the results of the study, it is possible to collaborate with a ‘better’ patient to help researchers get familiar with the operational procedures of PER, accumulate experience and gradually enhance the feasibility of implementation [19]. This can aid researchers in their growth and promote the application of PER in China. When there is a preference for certain patients during selection, researchers should explicitly acknowledge the limitations of sample characteristics in the results analysis and conclusion sections, carefully interpreting the study findings. As experience accumulates and methods evolve, Chinese researchers can progressively expand the participant groups in PER, applying it to a broader range of diseases and research topics.

To alleviate the burden on patients during their engagement in research, respondents suggested choosing meeting locations convenient for patients. They recommended scheduling research meetings during patients' planned follow-up appointments at the hospital. This strategy saves patients' time and transportation costs, making it highly feasible and recommended. Patients with severe or rare diseases in China are often treated in hospitals across regions in search of better outcomes. These patients may incur additional costs such as travel and accommodation fees when participating in research. It is recommended that researchers cover these expenses to alleviate the burden on patients, a conclusion drawn from the practical experiences of other scholars [20]. For patients who are nonlocal or have difficulty in travelling, respondents suggested that online forms of PER may be a good option that breaks through geographic constraints and offers more convenient scheduling, adapts to the patient's daily life and reduces the cost of PER. Discussing a convenient meeting format with patients was also seen as a sign of respect for patients [15]. However, online meetings have certain requirements for network configuration and devices, and some patients may find them challenging to operate. Additionally, there may be concerns about network security and data privacy, necessitating enhanced protective measures. Exploring whether there are differences in patient contributions between online and offline PER implementation, as well as investigating the experiences of both researchers and patients, is a direction for future research.

In this study, respondents emphasized the importance of respecting patients as the foundation for conducting any activities. Respecting patients and ensuring equal rights for all members are considered by many scholars to be the most crucial principles in PER [10, 21, 22]. Respectful collaboration is is defined by the Canadian Institutes for Health Research as ‘researchers, practitioners and patients acknowledge and value each other's expertise and experiential knowledge’ [23]. which means that respect involves not only demonstrating polite language and behaviour towards individuals but also respecting their contributions. It entails empathy, understanding their perspectives and genuinely incorporating their ideas into the considerations of the research. A proposal for how academic researchers can best collaborate with patients and community members on health research projects was constructed by Canadian researchers: roles and responsibilities, respectful collaboration, communication and planning and sharing knowledge [24]. Participants in our research also emphasized that minimizing communication barriers is a sign of respect and provides the foundation for facilitating patient expression. Efforts to enhance the quality of communication should involve avoiding the use of jargon that disregards the patient's cognitive level [21].

Participates indicated that one of the biggest barriers to implementing PER in China may be the establishment of an enthusiastic and expressive atmosphere in meetings for patients to speak, since Chinese people are subtle, introverted and have a low willingness to express themselves, which is greatly influenced by China's cultural and educational background. First, traditional Confucian values in Chinese culture emphasize humility, caution and self-restraint, prioritizing collective interests over individual, which influence people's modes of expression, being subtle and euphemistic, and often reluctant to express views in public that are not in line with the majority or the authority. The history of Western countries has witnessed the Enlightenment, which may have contributed to their culture placing greater emphasis on individual rights and freedom of expression.

Secondly, for a long time in the past, Chinese education has focused more on memorization and the transmission of knowledge, and the pursuit of the ‘right answer’, so people believe that they should give the ‘right answer’ when asked. In addition, Chinese individuals place great importance on ‘face’, a desire to present a positive image and social status to the outside. They set high expectations for their performance and are acutely attentive to external evaluations, seeking approval and admiration. However, a lack of confidence in engaging in the challenging activity of PER and uncertainty about expressing the ‘right answer’, there's a fear of losing face if their contributions are ‘incorrect’. This uncertainty often leads individuals to refrain from speaking up. The emphasis on face has also brought a little benefit to PER, because refusing someone may be seen as not giving them a face, patients are embarrassed to refuse an invitation from a researcher in the role of their doctor. This dynamic could make it seemingly easier to invite patients to join research in China, but they may only superficially agree to take part, and will not be truly committed and outspoken in expressing their own viewpoints.

To address this barrier, respondents suggested informing in advance that patients' viewpoints will not be considered ‘incorrect’ or subject to criticism, incorporating practices like taking turns to speak during meetings and providing a chance for introverted individuals to express opinions anonymously [21]. Researchers should seek to understand patients' perspectives and engage in constructive discussions at appropriate times. Achieving these shifts in perception and fostering an inclusive atmosphere may require training for both the research team and patients. Researchers should invest time in building relationships, demonstrating genuine interest in participants' perspectives, and creating a supportive and non-judgmental environment for open dialogue. Also, researchers should be mindful of participants' concerns about ‘face’ and social status. Respecting participants' dignity and autonomy, and acknowledging their contributions publicly can help alleviate concerns about losing face and encourage active participation.

In previous lessons from PER, negative emotions were expressed by patients when their contributions did not lead to changes in research decisions [20]. However, respondents in this study held a neutral stance on this issue, which may be attributed to the fact that Chinese patients' participation in PER is not driven by the pursuit of individual values. Their humble qualities may result in lower expectations regarding their ability to make significant contributions, so feelings of frustration are not overly strong when contributions are limited. Nevertheless, providing positive feedback on patients' expressions remains helpful in boosting their enthusiasm.

In this study, respondents believed that patients should be provided with incentives to engage in research, among which a substantial financial reward might be the most effective. A review indicated that 35% of PER researchers reported offering financial compensation and reimbursement for patients' time, knowledge and expenses during their engagement [10]. Our participates were contacted with Chinese patients of old age, who grew up in a time of scarce resources and economic hardship, so they expect financial rewards to reflect their engagement. Most of these patients have only an elementary school education or less, so it is often difficult to understand the value of their engagement with scientific knowledge and medical advances. This phenomenon reflects the economic and cultural perceptions of a particular age group in China. In PER practices in low- to middle-income countries, it is also observed the need to compensate patients for the loss of income incurred due to participating in meetings [11]. An appropriate compensation policy needs to be carefully considered in the future to balance patients' contributions and rewards. Over the past decade, as more Chinese individuals pursue higher education, their engagement in scientific research has increased. They now value factors like social recognition, knowledge acquisition and self-fulfilment over purely economic incentives. To meet diverse patient needs, personalized reward systems should be designed, considering individual preferences and expectations. This approach may better align with their values and enhance motivation for active participation. In previous research reports, young individuals have shown a preference for formal recognition of their contributions through certificates or recommendation letters [25].

In this study, participants expressed the belief that patients may be inclined to participate in PER with the expectation of obtaining more convenient medical services, as difficulties in booking appointments with specialists and long waiting times for medical treatment remain issues in China. However, this perception may be misguided, as researchers should not offer different medical services based on whether patients choose to engage in research or not, according to ethical principles. This highlights the need for more public education on PER for patients, enabling them to have a transparent understanding of what PER entails for them. Additionally, researchers require more training on ethical considerations to avoid ethical violations.

Some respondents believed that PER holds potential positive psychological effects. However, past experiences with PER have revealed negative psychological impacts, as some studies may require patients to recall unpleasant experiences [15]. While informing patients of potential positive psychological effects may attract their participation, it may also lead to heightened expectations, resulting in a mismatch between expectations and reality and leading to a negative experience. Therefore, it is essential to neutrally introduce the process to patients before recruitment, rather than resorting to false advertising. Researchers also need training to recognize this aspect. Several practices may help to minimize this traumatization of patients, such as incorporating a trauma-informed intersectional analysis within the development of training, practice and evaluation with regard to public involvement in health research [26].

Respondents emphasized that PER researchers need to be prepared in various aspects. Researchers with strong psychological resilience can better handle potential setbacks, persist with patience and effectively solve problems, which has been unnoticed in previous studies. Additionally, excellent communication and coordination skills are crucial for ensuring efficient teamwork within the research team and fostering smooth communication with patients. Researchers with a clinical background find it easier to comprehend patients, establishing a sense of closeness and trust. Therefore, researchers need comprehensive preparation [27]. Researchers possessing these abilities can be given priority, and improve their readiness through assessment and training.

Respondents expressed an understanding of the value of patient involvement in research. Previous research has highlighted the importance of providing training and education to research teams. Insufficient understanding of the principles and implementation methods of PER can significantly impede the formation of an atmosphere that respects patients' contributions. Therefore, it is essential to conduct PER training for all team members [10, 21]. The participates suggested that patients may only provide value in certain stages of the research, which might be limited because the concept of PER has not been widely promoted in China. Some theoretical frameworks have been constructed to guide the design and implementation of PER, allowing researchers to choose based on the research type and feasibility of implementation [7, 8, 28]. The application of certain tools can also ensure the quality of PER. For instance, Julia Abelson et al. [29] developed the Public and Patient Engagement Evaluation Tool (PPEET) to assess the level of engagement of participants, projects and organizations. Clayton Hamilton et al. [30] created the Patient Engagement In Research Scale (PERIS), which allows patients to self-assess their level of involvement in research. Our research team is currently working on translating these tools into Chinese, laying the foundation for PER implementation in China.

5 Limitations

This study has several limitations. First, the sample is specific to a particular region in China. Given the geographical and cultural differences across the country, strategies for promoting PER may vary. Our sample includes participants from various hospitals and academic institutions, covering different types of facilities and involving teachers from different regions, this diversity may help mitigate the limitations to some extent. In addition, the interviewer already had some research experience in the field of PER so that the impact of these perceptions and own research experiences were brought into the data analysis. To minimize this impact, interviewer received training on qualitative research principles, and the research team engaged in in-depth discussions during the analysis stage to ensure the objectivity and credibility of the results.

6 Conclusions

PER has become a topic of great interest globally. The large patient population in China and the cultural inclusiveness provide a bright prospect for the implementation of PER in the country. This study delves into strategies for promoting PER from the perspective of researchers, exploring ways to encourage reserved Chinese patients to express themselves, personalize incentives to attract patient participation, and ensure thorough preparation by researchers. These suggestions not only offer practical methods for Chinese researchers but also provide valuable insights for researchers in other nations, contributing to the promotion of PER in different cultural and social contexts and offering solutions for the challenges of symbolic engagement. In the future, we aim to investigate barriers and facilitators of PER from the perspective of Chinese patients, further advancing the development of PER in China.

Author Contributions

Lin Yang: writing–original draft, formal analysis, project administration, data curation, methodology, software, funding acquisition, investigation, visualization, resources. Yu-xiao Liu: writing–review and editing, supervision. Bi-xia Wang: formal analysis. Meng-jiao Yu: formal analysis. Wei-Wei Bian: writing–review and editing, supervision, formal analysis. Cai-feng Wang: writing–review and editing, supervision, formal analysis. Hong Ruan: writing–review and editing, formal analysis, supervision, methodology.

Conflicts of Interest

The authors declare no conflicts of interest.