The power of language: how to bridge the gap between healthcare research and patients – a scoping review

Abstract

Objective

The value of patient involvement to the design, conduct, and outcomes of healthcare research is increasingly being recognized. Patient involvement also provides greater patient accessibility and contribution to research. However, the use of inaccessible and technical language when communicating with patients is a barrier to effective patient involvement.

Methods

We analyzed peer-reviewed and gray literature on how language is used in communication between healthcare researchers and patients. We used this analysis to generate a set of recommendations for healthcare researchers about using more inclusive and accessible language when involving patients in research. This scoping review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for Scoping Review (PRISMA-ScR) checklist.

Results

Four major themes about the use of language were developed from the literature analysis and were used to develop the set of recommendations. These recommendations include guidance on using standardized terminology and plain language when involving patients in healthcare research. They also discuss the implementation of co-development practices, patient support initiatives, and researcher training, as well as ways to improve emotional awareness and the need for greater equality, diversity, and inclusion.

Discussion and conclusion

The use of inclusive, empathetic, and clear language can encourage patients to be involved in research and, once they are involved, make them feel like equal, empowered, and valued partners. Working toward developing processes and guidelines for the use of language that enables an equal partnership between researchers and patients is critical.

PLAIN LANGUAGE SUMMARY

Patient and public involvement is when patients, carers, and the public are included as partners in all stages of healthcare research. Patient involvement has been shown to have a positive impact on people and on research itself, but researchers often use language that is complicated, confusing, or unsuitable for patients. This can lead to less meaningful patient involvement in research.

Our work looked at two areas: (1) how using unsuitable language can be a barrier to effective and meaningful patient involvement; and (2) what can be done to help improve communication between healthcare researchers and patients.

We started by finding out what has already been researched and published in these areas. We looked in medical journal databases for articles that were relevant to the topic. We also searched Google and the websites of relevant organizations. From looking at these sources, we found four common themes. These themes are: (1) lack of standardized terminology for patients involved in research; (2) consistent overuse of technical, scientific, and medical language; (3) positive outcomes of using language to show emotional understanding; and (4) language as a powerful tool for promoting diversity, equality, and inclusion of patients involved in research.

Using these themes, we then developed seven recommendations to help improve how healthcare researchers and patients communicate with each other. These recommendations are: (1) using standardized terminology; (2) using plain language; (3) co-developing patient information; (4) providing patient training, mentoring, and support; (5) introducing researcher training; (6) having emotional awareness; and (7) improving equality, diversity, and inclusion.

A graphical plain language summary can be found as Supplementary material for this article.

Keywords:

• Patient involvement
• language
• patient engagement

Introduction

Language definitions

For the purpose of this paper, we use the term “patients” to encompass all patients, family members, and carers who share their concerns and perspectives in healthcare research, irrespective of their sex, gender, ethnicity, education, socioeconomic status, or age. We use the terms “involvement” and “patient centricity” to describe the active engagement and participation of patients in the design, conduct, and/or dissemination of health research. Finally, we use the term “healthcare researcher” to describe any professional, either publicly funded or industry-sponsored, who works directly with patients or patient data, to conduct research on health, disease, and treatments.

Background

The involvement of patients in healthcare research or healthcare decision-making is often termed “patient and public involvement,” “patient engagement,” or “patient centricity.” Although these terms vary and are used inconsistently, they share some common concepts: listening to and partnering with patients and placing their perspectives and well-being at the core of all initiatives^1,2.

The value that patients can bring to the design and conduct of healthcare research is being increasingly recognized^3–5. Partnering with patients in research has been shown to improve individual and public health outcomes³. Patient centricity enables patients to contribute as equal partners⁴ in a democratic manner⁶, allows an empowered and emancipated patient voice to effect tangible change in research processes^7,8, and leads to greater patient accessibility to research⁵. Patient involvement in healthcare research has also been shown to have a positive impact on researchers themselves, allowing them to gain new insights into disease experience, to learn how to better communicate with patients about their disease, and to re-evaluate their own personal and professional values^9,10.

Healthcare researchers, whether they are publicly funded or industry-sponsored, must therefore carefully consider how to meaningfully partner with and involve patients. Several guidelines are available for publicly funded researchers on best practice, particularly in the UK^11–14, and patient involvement is a requirement in many grant applications. Additionally, regulatory agencies, such as the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK, have also published patient involvement guidelines for their work and employees, including training programs focused on patient involvement best practice¹⁵. A comparable level of requirement and guidance on patient involvement is still lacking within industry-sponsored healthcare research, although some progress has been made in recent years^5,16.

Even when patient involvement is planned for in a research project, it may not always be effective. To be meaningful and have impact, patient involvement must overcome several barriers. One major barrier that hampers effective patient involvement is a lack of clear, open, and transparent language for communication between healthcare researchers and patients¹⁷. Examples include the use of technical, scientific, or generally inaccessible language by researchers when communicating important information with patients, particularly those who are vulnerable (e.g. elderly patients or those who have difficulty communicating or understanding) or have low levels of health literacy¹⁸. Another example includes the use of language that does not enable effective involvement of patients from minority groups, who are under-represented in contemporary healthcare research¹⁹. Poor communication by healthcare researchers can have an ostracizing effect on patients and can result in patients not feeling they are able to actively contribute to research, or not feeling like they are involved in the first instance²⁰.

It is therefore important to understand how language is used in communication between healthcare researchers and patients in the design and conduct of healthcare research, and to assess whether it allows for a diverse population of patients to contribute meaningfully and equally to the design and conduct of research.

Objective

This scoping review seeks to address several research questions.

• Question 1. What terminology is used to refer to patients who are involved in the design and/or conduct of health research? Are these terms clear and uniform, and are they well understood by patients?

• Question 2. What strategies and interventions have industry and academia adopted to ensure more inclusive and accessible language in their communication with patients, and what were the outcomes of these interventions?

• Question 3. Within communication in English, is there a consideration to ensure the equality, diversity, and inclusivity of different perspectives, especially across different races and ethnicities?

After synthesizing the available literature, this paper offers a set of recommendations for professionals working in health research, in particular life science industries, about how they can adopt more inclusive and accessible language when involving patients as partners in research.

Methods

The research team comprised multiple stakeholders including academic researchers, industry researchers, and patients. We chose a scoping review format because of the wide scope of the topic and the fact that the source information is dispersed across both peer-reviewed and gray literature. We also determined that it would identify common themes and other qualitative data, as well as highlight knowledge gaps within the literature, better than other review methodologies^21–29. This methodology allowed us to critically appraise and answer specific questions to produce our set of recommendations. This scoping review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for the Scoping Review (PRISMA-ScR) checklist^21,30,31.

Patient and public involvement

The development of the research questions and outcome measures were informed by inclusion of a patient within the authorship team who was involved in the conceptualization, design, searching, and writing for this article. During the conceptualization and design discussions within the authorship team of this research, the patient contributed their lived experience as a patient, as well as their expertise from working for and with patient–carer groups. This helped to guide how the research was to be undertaken, how the literature search should be conducted, and informed our recommendations. Patient and public involvement in this work adheres to Guidance for Reporting Involvement of Patients and the Public (GRIPP2) short form guidance³².

Initial scoping

Before initiating a comprehensive literature search, a targeted web search using Google and Google Scholar was conducted to identify relevant terms, definitions, and frameworks common across a range of sources, and to determine the potential importance of material within the gray literature.

Search strategy

A comprehensive literature search of MEDLINE, Embase, and the Cochrane Library was conducted for peer-reviewed articles published over a 10-year period, from October 2011 to October 2021. This time frame was chosen to allow for the inclusion of a sufficient volume of recent literature while keeping the amount of information manageable for review. Search terms included “patient centricity,” “patient-centred,” “patient involvement,” “patient-centric initiatives,” “patient-centred care,” “patient engagement,” “patient participation,” “patient communication,” and “patient carer” as well as Medical Subject Headings (MeSH) terms. Single search strings and combination search strings using Boolean operators “AND” or “OR” were utilized. A full list of search terms used in this peer-reviewed literature search is shown in Table 1. The search included both free text and MeSH terms.

Table 1. Keywords used for the peer-reviewed literature search.

Population	Intervention
Patient centricity	Pharmaceutical industry
patient-centred	Drug discovery
Patient-centric initiatives	Clinical trial design
patient-centred care	Product development
Patient engagement	Public participation
Patient participation	Public engagement
Patient communication	Medicines development
Carer	Research design
Patient carer	Research delivery
Language	Drug development
Jargon	Drug design
Patient involvement
Consumer involvement
Collaborative methodologies

During the initial scoping exercise, gray literature was identified as an important source of information about this topic. Therefore, a concurrent and comprehensive manual search of the gray literature was also conducted. The following abbreviated search strategy was determined through the co-authors’ expert knowledge of the field. The full gray literature search strategy is outlined in Supplementary Appendix S1.

• An initial search using the keywords outlined in Table 2 using Google Advanced Search, filtering results by “English Language” and searching only the first two pages of results.

• A search using the keywords outlined in Table 2 on the global and UK websites of the five largest pharmaceutical companies in the world, ranked by their revenue in 2021. These companies were Johnson & Johnson, Pfizer, Roche, AbbVie, and Novartis³³.

• A search of the keywords outlined in Table 2 on the websites of various healthcare initiatives, public–private partnership consortia, research funders, pharmaceutical forums, and industry bodies, which are outlined in Supplementary Appendix S1.

Table 2. Keywords used for the gray literature search.

Search terms
Patient centricity	Patient participation
patient-centred	Patient communication
Patient-centric initiatives	Patient language
patient-centred care	Patient jargon
Patient engagement	Patient involvement

The list of search terms used in the comprehensive gray literature search is shown in Table 2. These keywords are a subset of those in Table 1 and were selected as the terms deemed to achieve a wide-ranging coverage of the relevant gray literature while keeping the search manageable. A small number of additional sources previously known to the authors were also included in the search.

Inclusion and exclusion criteria

Studies were included on the basis of predefined–defined eligibility criteria (Table 3). Studies were excluded if they focused on:

Table 3. Eligibility criteria for data extraction.

	Eligibility criteria
Population	Patients involved in research design and conduct with either industry or academia
Intervention	Language used to communicate with patients
Comparator	Any or none
Outcome	Any outcome related to involvement, engagement, or equal and meaningful contribution of patients, or none
Study design	Any
Date restrictions	October 2011 to October 2021
Language restrictions	English language
Publication type	Any
Country	Any

• Health service design and provision, or communication with healthcare providers.

• Dissemination of research to patients and other stakeholders.

• Communication between patients and either industry or academic researchers in a language other than English.

Screening procedures

All articles that met the inclusion criteria in the comprehensive peer-reviewed literature search underwent title and abstract screening. The remaining articles were subsequently selected for full text review to identify the final articles for inclusion.

One reviewer conducted both the title and abstract screening. The same reviewer also conducted the full text review. A second reviewer independently screened 20% of the articles to check for agreement and avoid selection bias. The level of agreement between reviewers was quantified with a kappa score. The weighted kappa score was 0.73, indicating substantial agreement. Any discrepancies between reviewers were resolved by consensus.

One reviewer conducted the gray literature search and subsequent screen. All articles that were retrieved from the gray literature search were manually screened against the inclusion criteria and assessed for relevance following title and full text review.

Data extraction and synthesis

A data extraction table was developed to ensure systematic retrieval of the following information from the comprehensive peer-reviewed literature search: title, reference citation, year, country, study design, summary of methodology, results, and patient characteristics (Supplementary Appendix S2).

Thematic analysis, a method based on the analysis and identification of repeated patterns across a dataset, was used to systematically identify and sequentially derive emerging themes. Thematic analysis was conducted by two reviewers independently and then iterated through discussion with the whole authorship team^21,34.

During the full text review of the gray literature search, the sources were evaluated for their relevancy to discussing the use of language between healthcare researchers and patients. Irrelevant sources and those that did not contain useful data in order to discuss this topic were excluded. Records were also excluded if the source was inaccessible, a duplication, or a summary of a larger document. Data were manually extracted from each source and the following information was retrieved: title, author/organization, summary of information, within allocated time frame of search, and uniform resource locator (URL) (Supplementary Appendix S3).

A scoping approach was chosen to synthesize the data and generate new insights beyond a summary of the findings^21–29.

Results and discussion

Literature search, screen, and exclusion process

In total, 562 articles were retrieved from the peer-reviewed literature search, and 487 were excluded. Seventy-five remaining articles were selected for full text review to identify the final articles for inclusion.

A further 498 articles, guidelines, and resources were identified from the gray literature search, of which 261 were excluded.

After full text review, 40 articles from the comprehensive peer-reviewed literature search (Supplementary Appendix S2) and 237 items from the gray literature search (Supplementary Appendix S3) were identified for inclusion. The full selection process, including reasons for exclusion, is represented in a flow diagram (Figure 1)^30,31.

Figure 1. Flow diagram outlining the process for identification, screening, and inclusion of studies from peer-reviewed literature databases and the gray literature^30,31.

Four major themes were developed from the literature analysis to help answer our research questions

• Question 1. What terminology is used to refer to patients who are involved in the design and/or conduct of health research? Are these terms clear and uniform, and are they well understood by patients?

• Theme 1. There is a lack of standardized terminology for patients involved in research

Based on our expertise, the terminology regarding the roles, tasks, and responsibilities of patients involved in research clearly appears to be growing, but our searches revealed inconsistent use of this terminology in research (Table 1). Terms such as “engagement,” “involvement,” “partnership,” and “co-production,” among many others, are rarely defined and, although similar, often represent distinct concepts³⁵.

A horizon scan of terms and definitions related to patient involvement found more than 20 terms used across multiple sectors³⁶. The scan also found that single terms had up to seven different definitions³⁶. These findings corresponded with our own analysis of terminology, in which 12 different terms for involvement and five terms to describe patients were coded (Table 4).

Table 4. Terms coded within our analysis for involvement and to describe patients.

Terms for involvement	Terms to describe patients
Patient centricity	Patient
patient-centred	Carer
Patient-centric initiatives	Patient carer
patient-centred care	Consumer
Patient engagement	Public
Patient participation
Patient communication
Patient involvement
Consumer involvement
Collaborative methodologies
Public participation
Public engagement

Beyond being an etymological concern, this variety and disparity in terminology makes it difficult to establish clear aims for patients involved in research and is a barrier to the active collaboration of researchers and patients^37–39. For instance, there may be language barriers in the interpretation of words like “engagement” and “involvement,” with one study noting that “engagement” in some languages may imply that there is a fee for service⁴⁰. Another study notes that the interchangeable use of terms such as “involving,” “participating,” “collaborating,” “consulting,” and “engaging” when referring to patients can be confusing for both patients and researchers, and that terms like “co-production” may imply consulting patients regularly or that they are actively involved in collecting and interpreting research data⁴¹.

Using language precisely and consistently can avoid negative consequences, such as unclear expectations, power imbalances, or hesitation from patients about being involved in research⁴². Several institutions, such as the National Institute for Health and Care Research (NIHR)⁴³, UK Research and Innovation (UKRI)⁴⁴, and Cochrane⁴⁵, have sought to clarify the terms used for referring to patients involved in research.

Additionally, a Dutch study has reported a tool designed to specifically describe and explain the different roles of patients and researchers within distinct stages of a research project. Titled the “Involvement Matrix,” the tool describes five different roles (listener, co-thinker, advisor, partner, and decision-maker) and three different stages in which patient involvement can occur (preparation, execution, and implementation)⁴⁶. A similar tool developed by the International Association for Public Participation (IAP2) also describes a spectrum of terms (inform, consult, involve, collaborate, and empower) and their associated desired outcomes for patient involvement in healthcare research⁴⁷.

However, although several studies and guidelines advocate for different terms to refer to patients involved in research, this may have unintentionally added to the growing lexicon and created more confusion rather than clarity.

Summary statement. To tackle the growing, unclear, and confusing lexicon for patient involvement in research, standardized terminology should be implemented across industry and academia when referring to the types of research involvement that patients can have.

• Question 2. What strategies and interventions have industry and academia adopted to ensure more inclusive and accessible language in their communication with patients, and what were the outcomes of these interventions?

• Theme 2. There is consistent overuse of technical, scientific, and medical language

Researchers often communicate with patients using technical, scientific, and medical language. This technical language can be a significant barrier to establishing effective partnerships with patients. Jargon, acronyms, and superfluous medical or clinical terms are often not known or understood by patients^48–51. Patients can also feel overwhelmed by a large amount of new information and have difficulty discerning what the most important points are^52,53. As a result, patients may not completely understand the process and direction of the research being undertaken, limiting their ability to contribute in meaningful and feasible ways⁵⁴. In addition, patients may feel intimidated and alienated from the research⁵³ and become less actively involved⁵⁵.

Overuse of technical language can also reinforce power imbalances between patients and researchers⁵⁶. These effects are more evident for certain patient populations, such as pediatric patients^57–61, older patients^62,63, and those living with dementia^50,64. The overuse of technical language also has immediate consequences for researchers, because it can lead to the false perception that patients are not equipped or able to contribute, and may reduce efforts to involve patients, especially those considered to be from harder-to-reach groups. Often, patients with lived experiences offer valuable insights that can substantially aid research design and implementation, thus helping with patient recruitment, adherence, and retention. Technical and inaccessible language can create barriers to hearing these valuable insights by triggering and alienating patients into feeling that they cannot adequately contribute. It may also lead to research results not being truly representative, because the profile of the patients involved does not match the studied population⁶⁵.

Summary statement. The overuse of technical, scientific, and medical language when communicating with patients has frequently been shown to be a barrier to effective and meaningful patient involvement. Despite this, healthcare researchers continue to overuse jargon, acronyms, and superfluous medical information. Using plain language and health literacy principles when communicating with patients could ensure more inclusive and accessible patient involvement.

• Theme 3. Positive outcomes of using language to show emotional understanding

The language used when involving patients should recognize the social and emotional needs of patients, as well as their experience of living with a disease and the impact that this has on them⁶⁶. Patients can feel that the discussions and meetings they participate in are solely scientific and task-oriented. Patients tend to appreciate more unstructured and social language and having more informal introductions and discussions with the study team, because this makes them feel valued as individuals as well as research partners^67,68. Patients also appreciate when time is given to understanding their stories⁶⁹, how and why they became involved in research, and what impact they could have⁴⁹. They also appreciate hearing about the impact of their involvement from the researchers with whom they are working⁴⁹.

The benefits of using emotionally engaged and inclusive communication have also been felt by researchers. An emphasis on sharing and understanding the individual stories and experiences of patients and researchers can lead to mutual learning and new insights⁹. In one study, researchers reflected on how this allowed them to connect with patients, relate to their experience of disease, and feel empowered to understand and approach patients about all the aspects of their disease⁹. Another study reported that meeting patients who were involved in research had a “profound impact” on the personal and professional values of some researchers. This included one researcher re-evaluating their career and another calling for a change in how researchers conduct their work. Some of the researchers within this study also reported being surprised at the level of interest and enthusiasm about research that was shown by the patients¹⁰.

Our findings also highlight the importance of using language to show an understanding of the constraints and needs of patients, many of whom have other occupations and may be living with a chronic illness⁷⁰. For instance, patients appreciate language that acknowledges that they may be busy and have other commitments, including jobs or family⁵⁷, and that the researchers were being thoughtful and accommodating of these circumstances^67,71. Patients appreciate receiving acknowledgment of the benefits of their contribution, such as reports about how their input was used in research⁷², and messages of thanks for their contributions⁷², or celebrating major milestones^9,72.

Beyond highlighting the importance of using emotionally aware language, one study designed a communication tool that enabled patients to share what was important to them as research partners, and how to jointly set an agenda. This tool also guided both patients and researchers on how to navigate disagreements through the use of constructive and empathic language⁷³.

Summary statement. Several studies have shown the positive outcomes of using emotionally aware language when communicating with patients. These positive outcomes are not limited to patients either, as healthcare researchers have frequently reported positive impacts on their working practices and outlook.

• Question 3. Within communication in English, is there a consideration to ensure equality, diversity, and inclusivity of different perspectives, especially across different races and ethnicities?

• Theme 4. Language as a powerful tool for promoting diversity, equality, and inclusion of patients involved in research

It is important to involve patients who reflect the diversity of the population and of a particular condition⁷⁴. This is particularly true of those from under-represented and vulnerable groups (e.g. minority, poor, rural, inner city, and underserved populations)^75,76, and this is considered within NIHR standards⁷⁷. There is currently insufficient diversity among patients involved in research^65,66,78, especially with regard to people from minority ethnic communities and faith groups, as well as single parents, non-heterosexual people, those with disabilities, and those who do not have a university education⁵³.

The use of language that is not inclusive or tailored to the needs of patients may result in the involvement of only those patients with higher levels of education, more financial security, and more available time⁷⁹. This may lead to patients turning into professionals and the development of so-called “professional” patient representatives⁸⁰. If only a select few “professional” patient representatives are involved in research, there may be a substantial bias, leading to decreased inclusivity and equity in the positions and opinions that come across through the inclusion of patient perspectives⁸¹. Although barriers to diverse, equal, and inclusive patient involvement can arise at any time during a research project, many studies have shown that inappropriate recruitment materials are often a major hurdle for such involvement. Therefore, high-quality and tailored recruitment materials using the appropriate language are critical to achieve greater diversity, equality, and inclusion for patient involvement in research⁸².

Summary statement. It is well known that there is a lack of diversity in the patient populations involved in healthcare research. The proper use of inclusive and tailored language can create a patient demographic involved in research that is more representative of the diverse populations we live in and of a specific condition.

Recommendations

Our literature analysis and personal experience highlight several gaps and pitfalls relating to the use of language in healthcare research.

Here, we outline several recommendations to help improve the communication between healthcare researchers and patients.

We believe that these recommendations should lead to more meaningful recruitment, involvement, and retention of patients throughout healthcare research processes. However, although we recommend that key standardized practices are implemented across healthcare research, we acknowledge that there is a need for individualized processes in many situations.

Standardized terminology

To ensure transparency and clear expectations, we advocate for standardized terminology across industry and academia that can be universally used to refer to the types of involvement that patients can have, and how terminology shapes the patients’ roles and responsibilities¹⁸. This would require the relevant bodies across industry and academia to come together to standardize and implement. The standardized terminology can be used to establish a common ground between researchers and patients at the beginning of a research project, before developing individualized terminology within each project¹⁸. However, once individualized terminology is introduced within a specific research project, it is the researcher’s and organization’s responsibility to ensure that the language used is continuous and consistent in order to avoid confusion and ambiguity. Standardized and individualized terminology should be designed in partnership with a diverse demographic of patients and be accessible and culturally aware^56,83.

Plain language

Acronyms and jargon should be avoided where possible^56,61,84, and plain language should be used^{38,70,83,85,86}. Questions should be kept simple, unambiguous, and answerable⁷². Health literacy guidelines^51,70, as well as tools for screening patients at risk of low health literacy⁸⁷, could be used when conducting patient involvement activities. Health literacy screening tools can help researchers to understand the level of health literacy of patients on a case-by-case basis⁸⁷. Researchers can then tailor their language appropriately for communication with individual patients and employ appropriate health communication techniques for patients with low health literacy⁸⁸.

Any information that is meant to be shared with patients involved in research should be reviewed with the specific purpose of improving readability and making sure both language and content are appropriate^1,81. Industry and academia should embed health literacy processes and tools into their standard practices when producing all patient-facing materials and documents. There should also be opportunities for patients to check their understanding of information throughout the whole research project.

Although several interventions have been suggested or have already been adopted by industry and academia to overcome poor communication between healthcare researchers and patients^43,89–94, we believe there remains a need to develop specific processes and guidance about the language used when researchers and patients work together.

Co-development

All information and materials developed for patient use should be co-developed with patients to encourage involvement^70,94,95. There should be many opportunities for patients to contribute to the design and development of these materials, provide feedback, and ask questions throughout the development process. Co-development aids plain language, understandability, the use of culturally appropriate language, and actionability⁹⁶.

Patient training, mentoring, and support

Adequate tools and support, such as those offered by the European Patients’ Academy on Therapeutic Innovation (EUPATI)^93,97,98 and Patient-Centered Outcomes Research Institute (PCORI)⁹⁹ should be advertised and made available by industry and academia for patients who want mentoring or training in order to fully participate in healthcare research processes. This includes improving patients’ understanding of the language and processes of research^40,54,100, the background information on the relevant research topic⁵⁴, and how to interact effectively with researchers⁵⁴. Through condensed, easy-to-understand background information, patients can become acquainted with the language and terms used in a relevant area of research, at their own pace and preference¹⁰¹. In time, this learning will allow patients to meaningfully contribute to all stages of the research processes, providing researchers with valuable insights from experienced patient research partners¹⁰².

Researcher training

Patient involvement training and tools are currently available for researchers^94,103–108. These tend to focus on the value of patient involvement⁴, how to ensure that the language used is simple and concise while still being scientifically accurate and compliant^106,107, and how to use language in a way that encourages meaningful involvement^35,63. However, training is usually not mandatory and is frequently not attended owing to the heavy and conflicting schedules of healthcare researchers. We therefore recommend that researcher training programs focused on patient involvement and patient-friendly language become mandatory as part of induction and early-career researcher processes.

Emotional awareness

Interactions between researchers and patients should not be transactional but true partnerships. Industry and academic processes should support these ways of working by using emotionally aware language that makes patients feel they are trusted and valued partners. Thanking patients and providing feedback should be routine across industry and academia, but we should go further. We recommend that researchers commit to building long-term relationships with patients and helping to support the emotional well-being of patients throughout the research process⁵⁶. For example, researchers could help to schedule regular check-ups with patients to discuss their well-being or help to set up support groups between patients with similar lived experiences. However, studies have also shown that for time- and money-limited researchers, realistically, this is beyond the remit of the individual researcher. Structural and organizational support is necessary, but often lacking, in order to support long-term and meaningful patient involvement practices^109,110.

Researchers have also described the emotional burdens that can occur upon themselves when building long-term relationships with patients. Patient involvement also tends to fall under the responsibility of junior staff, complicating the incorporation of emotive and meaningful patient involvement when power imbalances or a lack of support by senior staff are present. Furthermore, junior staff are often employed on short-term contracts, whereby long-term emotional and meaningful partnerships with patients will be hard to build. Therefore, practical and social support from organizations is fundamental to achieving long-term effective and emotive patient involvement^109,110.

Equality, diversity, and inclusion

Researchers wanting to involve patients in research should use a broad range of channels and media for outreach, such as social media, online research networks, and video^111–117. Recruitment information and training should be appropriate for a wide range of health literacy levels¹¹⁸, be readily accessible, and be available in multiple languages^119,120. A major issue encountered during our gray literature search was that resources related to patient involvement were not readily accessible through Google searches, and finding them required prior knowledge and expertise from the authors. This is in itself a problem and there is a need to make these resources more accessible, either by making them easier to find online – such as in places where patients can easily go and find them – or by providing the patients with the knowledge of how to find them. Recruitment and training materials also need to be appropriate and adjusted for those in more vulnerable patient communities, such as the elderly^{50,57–60,62–64}. It can also be helpful to engage with a charity partner or directly with patient communities¹⁸, where appropriate, as they can help to plan how to use language in a way that appeals to and engages diverse groups of people⁷⁹. Furthermore, researchers should consider meeting patients in person at inclusive locations, such as faith centers, community centers, schools, and libraries. This is particularly useful for recruiting patients from hard-to-reach communities, especially those who have low levels of computer literacy.

Limitations of this study

This review had several limitations. Firstly, it focused on barriers when communicating in English, as cross-language research presents additional challenges^121,122. However, many of the principles and recommendations outlined within this review are likely to be applicable when conducting cross-language research. Secondly, there may be a publication bias, whereby information that shows the benefits and successes of patient involvement in research is more likely to be published over information that shows the challenges that can be involved. To minimize this potential bias, a comprehensive literature search, including gray literature from organizations conducting or advocating practices that support patient involvement, was undertaken to capture diverse and wide-ranging perspectives. However, the strategy in part relied on the expertise of the authorship team, so there may be other sources that were not discovered. In addition to this, because of the varied and inconsistent use of terminology around patient involvement within healthcare research, there is the possibility that other relevant sources using differing terminology were missed. Thirdly, while the authorship team includes academic, industry, and patient perspectives (two representatives from each group), the team is small and UK-based and may therefore not be fully representative. This study has also not differentiated between industry and academic sources during the scoping review process. In the authors’ experience, the ways of working and the understanding of the best practices around patient involvement often differ between industry and academia. Further work to differentiate between industry and academic information sources could help to clarify our recommendations. Penultimately, although our utilization of thematic analysis helped us to identify patterns in the literature data and develop our recommendations, it perhaps lacks the granularity of capturing language use patterns that a discourse analysis could provide. Future work employing a discourse analysis methodology could provide further important insights^123–125. Finally, our analysis was focused on how language is used, rather than on the wider topic of how information is communicated between researchers and patients, which also impacts upon effective patient involvement in research.

Future directions

This work has focused on the current barriers and pitfalls related to the use of language that prevent meaningful patient involvement in healthcare research. To understand why these barriers exist in the first place, future research should focus on what prevents researchers from using clear, open, and transparent language with patients.

During our literature search, we also discovered that industry resources about patient involvement were far harder to find than academic resources. Future work should investigate why this is the case and whether industry should publish more on the topic of patient involvement.

Although our research has focused on technical, scientific, and medical language, the use of complicated legal language can also be a barrier to effective patient involvement^126,127. Patients often encounter legal language in their first communications when joining a research project, such as in lengthy contracts. Therefore, ensuring that legal documents are clearly written in plain English should also be an essential step within effective patient involvement. Work in this area is being done, with the Association of the British Pharmaceutical Industry (ABPI) advocating for the use of plain English and the avoidance of overly complex documents when developing written agreements and contracts. They also support the use of medical writing guides from the Plain English Campaign in order to help draft legal contracts for patients involved in research^128,129. Similarly, a joint report from eight British patient organization charities has shown that complex contracts are a barrier to effective patient involvement, as patients frequently do not understand the documents they are signing. The report has therefore recommended for legal contracts to be written in plain language or contain patient-friendly sections¹³⁰. Although the use of legal language is a gap in the authors’ experience, we believe that further work in the future is warranted to help to improve the use of plain English legal language within patient involvement practices.

To improve communication, it has been shown that specific training and education on patient involvement in research is valuable for both patients and researchers^131,132. While several organizations within the UK and globally offer training for patients and researchers related to patient involvement in research^41,54, such training does not seem to be widely adopted as yet¹⁷. In the authors’ experience, patients also frequently report that currently available training courses are often intensive, scarce, and frequently inaccessible for many demographic groups. Patients also reported that they would prefer short and informal workshops focusing on language, figures, computing, and the whys and hows of effective patient involvement. This shows a need to co-design training alongside patients and to tailor the teaching towards the needs of patients. We also believe that training materials must be provided in a variety of languages other than English, and also be accessible online as well as face to face. Future work should investigate how best to provide effective and meaningful training and how to minimize the barriers to the widespread adoption of such training.

To build upon the findings and recommendations of our work, a wider and more representative group of patients should be engaged. This group should include more patients and more people from outside of the UK and Europe, as well as people from socioeconomic and ethnic minority backgrounds who have been historically under-represented in healthcare research.

Conclusions

Language is a powerful tool. The use of inclusive and clear language can encourage patients to be involved in research and, once they are involved, make them feel like equal and valued partners. Working towards developing processes and guidelines for the use of language that enables an equal partnership between researchers and patients is critical.

Transparency

Declaration of funding

This work was funded by Pfizer Ltd (award/grant number: not applicable).

Declaration of financial/other relationships

SD and NB are employees of Pfizer Ltd and hold Pfizer stock. RD, AB, and JP have no competing interests to report. Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Author contribution

Conceptualization: NB, SD, RD, and JP. Data curation: AB and Oxford PharmaGenesis. Formal analysis: AB and Oxford PharmaGenesis. Funding acquisition: NB and SD. Investigation: AB and Oxford PharmaGenesis. Methodology: NB, SD, RD, and JP. Project administration: NB and SD. Resources: NB and SD. Software: Not applicable. Supervision: NB, SD, RD, and JP. Validation: NB, SD, RD, and JP. Visualization: AB and Oxford PharmaGenesis. Roles/Writing – original draft: AB and Oxford PharmaGenesis. Writing – review and editing: NB, SD, RD, JP, AB, and Oxford PharmaGenesis.

Ethics statement

This work does not involve human participants and ethical approval was not required.

Patient consent statement

Any patients involved in this work confirm that they have seen the photo, image, text, or other material about themselves. They have read the article to be submitted and are legally entitled to give this consent.

Acknowledgements

Medical writing support was provided by Mark Elms PhD of PharmaGenesis London, London, UK, and Joana Osório PhD of Oxford PharmaGenesis, Oxford, UK, and was funded by Pfizer Ltd. These individuals have provided permission to be acknowledged. We also thank our patient advisors for their contribution to all aspects of this work.

Data availability statement

The data that support the findings of this study are available from the authors upon reasonable request.