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. 2025 Jun 11;22(5):515–524. doi: 10.1080/14796694.2025.2514415

Barriers and solutions for healthcare professionals to involve patients as partners in oncology research: Project RISE

Eamonn T Rogers a,b,✉, Thomas G Bognanno c,d, Thomas Perkins e, Brittany Wolf Gianares f, Kristine W Schuler g, Jan Geissler c,h, Vivian Larsen i, Dawn Lobban j, Laura E Dormer k, Jacqueline Daly c,l, Jessica Scott i, Eleni Efstathiou m
PMCID: PMC12915830  PMID: 40499185

ABSTRACT

Background

Barriers preventing oncologists from engaging patients as research partners remain. This study aimed to understand oncologists’ barriers to patient engagement and involvement (PEI) in research and identify solutions to overcome barriers.

Research design and methods

The study consisted of three phases: I, insights research (n = 6); II, qualitative research (n = 30); III, a Working Group of PEI experts providing recommendations (n = 10). Five hypotheses representing oncologists’ barriers to PEI identified in phase I were tested in phase II: A) preference for physician-led approach to medicine; B) limited PEI value in research processes; C) misconceptions about approaching PEI; D) practical barriers to PEI; E) traditional research dynamics preventing PEI.

Results

Hypotheses C, D, and E were identified as the most critical and ranked in descending order of difficulty to overcome (D, E, and C). Solutions were ranked according to importance (whether oncologists perceived barriers as prominent within their communities) and feasibility (for stakeholders to find solutions). Solutions included leveraging institutional PEI teams, allocating funding for PEI, practical/logistical support for patient research partners, incentivising PEI, facilitating training, creating a patient research partner directory, and PEI guidelines.

Conclusions

Enhanced support for oncologists and institutional incentives to encourage PEI in all aspects of research are required.

KEYWORDS: Oncology, patient authors, patient engagement, patient involvement, patient research partners

Plain Language Summary

Patient engagement and involvement (PEI for short) means healthcare professionals working in partnership with patients to plan and carry out research. However, PEI in research is not always achieved. In this study, the authors wanted to look at some of the barriers preventing cancer doctors from engaging and involving patients in research. They also wanted to find possible solutions to help overcome these barriers. Using interviews with 30 cancer doctors from the UK and US, 5 different barriers were identified: 1) some doctors prefer a doctor-led approach to medicine; 2) some doctors do not recognize the value of PEI in research; 3) practical issues preventing PEI in research; 4) traditional research processes that can prevent PEI; and 5) some doctors are unsure how to approach PEI in research. Barriers 3, 4, and 5 were ranked by cancer doctors as a priority. A group of 10 PEI experts, including patient advocates, then came together to look at the research findings and propose solutions. These included: linking up with specialized PEI teams in universities and hospitals; specific funding for PEI; practical support for patient research partners (e.g. payment for expertise as research partners), providing incentives to encourage PEI; training opportunities; a directory of patient research partners; and further guidelines to encourage PEI. While there are many examples of PEI in cancer research, cancer doctors require more support and resources to enable PEI to be commonplace in all areas of cancer research.

1. Introduction

The National Institute for Health and Care Research (NIHR) defines patient and public involvement in research as an active partnership “carried out ‘with’ or ‘by’ people who use services rather than ‘to,’ ‘about,’ or ‘for’ them” (p. 3) [1]. This approach is sometimes referred to as patient- or community-partnered research [2,3].

Various terms are used interchangeably to describe the role of patients in clinical research (Table 1) [1,4,5]. While participation, engagement, and involvement in research can be viewed as a spectrum of interactions between healthcare professionals (HCPs) and patients, this article focuses on interactions other than participation in a study or trial, collectively labelled patient engagement and involvement (PEI). Aligned with the European Patients’ Academy of Therapeutic Innovation (EUPATI) terminology for describing patient research partners (Supplementary Table S1) [6], patients in this article are defined as advocates (people with insights, experience, and networks in supporting patients with certain health conditions) or experts (people with extensive lived experience of one or more health conditions and technical expertise in research through training or experience) [1,6].

Table 1.

Terminology for patient participation, engagement, and involvement in research [1,4].

Term Description Example(s)
Participation Taking part in a research study as a participant Being recruited to a clinical trial, being interviewed, or completing a questionnaire
Engagement Information and knowledge exchange about research Raising awareness and disseminating study findings
Involvement Active partnership between patients and researchers with professional experience Co-applying for grants, co-designing clinical trials, analyzing data, presenting at congresses, coauthoring publications, and conducting research
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PEI is increasingly recognized as a valuable component of clinical research by academics, funders, providers, regulators, and the pharmaceutical industry [7,8]. Several organizations recommend PEI to be embedded in some or all of their activities, such as the Patient-Centered Outcomes Research Institute [9], Patient Focused Medicines Development (PFMD) [10], the Clinical Trials Transformation Initiative [11], the European Medicines Agency [12], the US Food and Drug Administration [13], and the National Institute for Health and Care Excellence [14]. Various guidance documents and resources have been developed to facilitate PEI in pharmaceutical industry-sponsored research, including those from EUPATI [15] and PFMD [16,17].

PEI can help align priorities, facilitate recruitment, allow certain patient populations to be more accurately represented, improve data collection and analysis, and enhance accessibility of findings [18,19]. However, PEI requires a cultural shift among individuals and organisations toward patient-driven approaches to healthcare, requiring commitment and investment of resources from the outset [18], as exemplified in oncology [20–22]. A scoping review of attitudes and approaches to PEI highlighted the growing interest and support for PEI; however, PEI appeared inconsistently embedded into healthcare systems and research networks, in part, due to inadequate infrastructure, guidance, and support [23–27]. Several barriers preventing HCPs and researchers from embracing PEI in their work have also been documented, including attitudes, unclear roles and expectations, inadequate communication, and limited resources, training, and support [9,18,19,23,28–31]. Concerns regarding equity, diversity, and inclusion are also commonly reported [28,30].

Inspired by anecdotal experiences of oncologists being reluctant or hesitant to support PEI, the Representation in Scientific Engagement (RISE) study was initiated to seek greater understanding of the factors driving this hesitancy in Europe and the US and to inform strategies to address and remove barriers. Therefore, the objectives of this study were to understand oncologists’ key barriers to PEI in oncology research and identify actionable solutions to help oncologists overcome these barriers.

2. Materials & methods

Project RISE was a three-phase study (Figure 1). In phase I, insights research was conducted with six oncologists (Europe, n = 3; US, n = 3) in 45-minute telephone interviews to better understand current perceptions about PEI in oncology research. Participants included those with (n = 2) and without (n = 4) PEI experience in research. Five hypotheses were generated from phase I for subsequent testing.

Figure 1.

Figure 1.

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Project RISE overview.

a HCPs (n = 4), patient/caregiver advocates (n = 3), medical communication professionals (n = 2), and a publisher (n = 1).

HCP: healthcare professional; PEI: patient engagement and involvement; RISE: Representation in Scientific Engagement; UK: United Kingdom; US: United States.

In phase II, hypotheses generated in phase I were tested with 30 academic oncologists (UK, n = 10; US, n = 20) in 50-minute telephone interviews between February and March 2023. A semistructured discussion guide was used (Supplementary Table S2) and interviews were conducted by one author (TP). Participants were licensed practicing oncologists (solid tumor focus), affiliated with an academic institution, and actively involved in clinical trial design and analysis, as speakers at scientific congresses, and/or as authors of scientific publications. Participants were identified via a recruitment company specializing in identifying HCPs to participate in market research activities; HCPs responded to questions they were asked verbally in a systematic manner to see if they qualified to participate per the aforementioned criteria. Participants were informed that their responses would be anonymized and could be used for research purposes, including publications. If in agreement, they provided verbal consent to participate. Insights gathering in Phases I and II from HCPs was conducted in accordance with the European Pharmaceutical Market Research Association guidelines, which state that research ethics committee/institutional review board approval is not required if studies meet the criteria of market research.

In phase III, a 3-hour Working Group meeting was held virtually on Zoom (San Jose, CA, US) in July 2023 with nine PEI experts; one additional expert participated by e-mail (Supplementary Table S3). All members of the Working Group are coauthors of this article. The Working Group was co-chaired by one patient (TGB) and one HCP (ETR). Working Group members represented different stakeholder groups, including patients (TGB, JG, JD), HCPs (ETR, VL, JS, EE), publishers (LED), and the pharmaceutical industry (BWG, DL). Attendees at the Working Group meeting included presenters (TP, BWG, KWS) and medical writing support provided by three individuals at Engage Scientific Solutions, who are listed within the acknowledgments. The Working Group considered the findings from phase II and provided recommendations for solutions to address the previously identified barriers from oncologists. Following the meeting, Working Group members had access to Miro (San Francisco, CA, US) to review and comment on the importance and feasibility of ranked barriers and proposed solutions. Working Group members subjectively grouped solutions according to their importance (whether oncologists perceived barriers to be prominent within their professional communities) and feasibility (for different stakeholders to find solutions). This grouping was based solely on the insights and experiences of Working Group members. During the Working Group meeting, PEI experts also discussed issues related to participation in research; these concepts were beyond the scope of this study but were captured and presented separately for completeness (Supplementary Table S4).

3. Results

3.1. Barriers to PEI in oncology research

Five hypotheses regarding current perceptions about PEI in oncology research were identified during phase I (Table 2). In phase II, oncologists had highest agreement with hypotheses C, D, and E as the key barriers to PEI in oncology research (Supplementary Figure S1). Oncologists ranked hypotheses D, E, and C in descending order of difficulty to overcome (Supplementary Figure S2). Findings are reported in order of priority identified by oncologists in phase II. Hypotheses A and B were ranked low difficulty by oncologists because of a lack of agreement that these barriers exist (Figure 2). Hypotheses D, E, and C were ranked high difficulty by oncologists because of the perception that these were the key and current barriers in the clinical environment and needed to be addressed (Figure 2). Hypotheses C and D included institutional and infrastructural barriers, and hypothesis E included individual and interpersonal barriers, primarily due to a lack of awareness on how to engage and involve patient research partners.

Table 2.

Hypotheses regarding perceptions about PEI in oncology research.

Hypothesis A “I prefer a physician-led approach to medicine, and therefore the research process as well, because it reinforces my confidence and expertise.”
Hypothesis B “Involving patients in the research process has limited value – or may only be valuable in specific contexts, such as quality of life studies or other patient-reported outcome studies.”
Hypothesis C “I do not know how to approach involving patients in the research process because there is a lack of infrastructure and incentivisation within my institution/working groups.”
Hypothesis D “There are practical barriers to involving patients in the research process, including increased workload for the research team, additional time needed to complete the research, and additional financial costs.”
Hypothesis E “There are dynamics within the traditional research process that prevent patient involvement, including lack of precedent, social/behavioral norms, limited patient interest, and uncertainty regarding the accountability of patients.”
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PEI: patient engagement and involvement.

Figure 2.

Figure 2.

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Ranking of hypotheses by difficulty to overcome.

3.1.1. Hypothesis D: practical resource barriers to PEI in the research process

PEI was not always a priority for oncologists, especially when they had limited or dedicated time for PEI because of competing institutional priorities, such as performance targets in the US (e.g., relative value units [RVUs]). Differences in payer models and policies appeared to influence how oncologists approached PEI in research. For example, oncologists could be discouraged from PEI since it takes time away from clinical care. Payers and budget holders were not always included in the conversation about PEI and, therefore, may not appreciate the value PEI can bring to the research process. Oncologists felt there was limited data demonstrating the value of PEI and called for additional evidence aimed at hospital managers and payers.

In addition, oncologists believed identifying and training patient research partners could add weeks or months to timelines, which could increase workloads and affect research design and implementation. Furthermore, patient research partners were not always paid for their time and, therefore, lack incentives to be involved. Practice appeared to be dictated by institutional norms and expectations, and budget to compensate patient research partners appropriately was often unavailable. Among US oncologists, compensation for patient research partners appeared to be justified; however, cultural differences, such as over-reliance on voluntary work in the UK, may impact expectations:

These patients, we call them consumers in this role, do it because they want to give back. We don’t compensate them for their time.‒ UK Oncologist

3.1.2. Hypothesis E: dynamics within the traditional research process prevent PEI

Some oncologists felt strongly that the precedent for PEI was established, whereas others disagreed; preclinical research was also viewed as inappropriate for PEI by some individuals. Meanwhile, those who wanted to engage and involve patient research partners did not necessarily know how to do this effectively and had little support. Oncologists required assistance in finding patient research partners with interest and expertise, and then engaging them throughout the entire process, not just at limited milestones (e.g., before a grant application deadline). Many were unclear about the level of experience required by patient research partners and were uncertain as to whether patients could only be considered experts on health conditions they lived with. Generally, they believed few patients would be interested in becoming patient research partners, and others felt concerned about making patient research partners accountable. Finally, oncologists acknowledged that some of their colleagues, and indeed patients, were more comfortable when the physician was “in charge,” recognizing cultural and generational differences influencing patient–HCP relationships.

3.1.3. Hypothesis C: lack of infrastructure and institutional incentivization for PEI

A common issue was the lack of defined pathways, protocols, tools, and templates for oncologists, leaving them unclear about the practicalities of PEI in oncology research. A lack of training for oncologists and key institutional stakeholders (e.g., administrators) was highlighted, specifically in helping them to understand the value of PEI and how to implement PEI practices. Oncologists also seemed unaware of the patient advocacy space in their region and, therefore, did not necessarily know how to find and engage patient research partners. Unfortunately, oncologists appeared poorly incentivized (or disincentivized) by their institutions to engage and involve patient research partners – most oncologists were not evaluated on PEI and did not receive quotas or bonuses. The most common incentive came from grants, where some applications required PEI to secure funding:

I agree. I don’t have any incentives in my institution to include patients.–US Oncologist

There was limited or no protected time for oncologists to dedicate to research. Furthermore, limited databases and directories for identifying patient research partners beyond oncologists’ own networks impeded how quickly HCPs could establish patient relationships for PEI activities. Poor communication and lack of transparency were also identified as barriers to building trust between patients and HCPs, potentially impacted by some institutions restricting non-staff members on site following the COVID-19 pandemic (at the time when this study was conducted). Limited support and training for patient research partners was also identified as a barrier.

3.2. Proposed solutions to PEI barriers in oncology research

During phase III, the Working Group of PEI experts proposed solutions and ranked them according to importance and feasibility (Figure 3), with consensus among the Working Group that all solutions were needed. Therefore, though solutions were prioritized, the Working Group advocated for the implementation of all solutions where possible.

Figure 3.

Figure 3.

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Sorting of proposed solutions by importance and feasibility.

Importance was defined as “the most prominent barriers identified by HCPs.” Feasibility was defined as “feasibility for different stakeholders to find solutions and remove barriers.”

HCP: healthcare professional; PEI: patient engagement and involvement.

3.2.1. Higher importance, higher feasibility

Specific funding for PEI should be provided. The funding source is most likely to be institutions and sponsors. There may also be a role for government funding; however, this will depend on the political climate in individual countries. Funding for PEI should also include compensation for patient research partners in recognition of their intellectual contributions, paid according to the fair market value (FMV) in the country of their engagement. Some may be unable to accept payments for their time as this can impact their financial situation, for example, when in receipt of government benefits. Therefore, institutions should be aware of the potential impact of compensation when establishing agreements with patient research partners, so they can advise them accordingly and set situational guidelines to help HCPs engage with patient research partners appropriately. Alternative methods of financial recognition include vouchers and donations to patient advocacy organizations.

Institutions should enable oncologists to leverage the expertise and support of wider research teams regarding PEI. For example, some institutions have dedicated PEI coordinators who work regularly with patient research partners. This could help remove pressure from HCPs while facilitating working relationships with patient research partners and tackling behavioral and social norms influencing PEI in research.

PEI experts felt that patient research partners should be supported from practical and logistics perspectives, such as minimizing out-of-pocket costs by booking travel and accommodation to attend meetings in advance. Patient research partners should also be asked about the kinds of support that would be most important for them – for example, flexibility in meeting locations.

Institutions also need to incentivize PEI by revising oncologists’ performance targets to accommodate more time in clinic to discuss opportunities for patients to become active patient research partners. Clearer direction from regulators who understand the importance and value of PEI could help to provide incentives, thereby setting expectations and standards to embed PEI into all phases of research. This could be facilitated by presenting data to research institution managers and payers demonstrating the long-term value of PEI.

Furthermore, oncologists need to build trust with patient research partners by communicating effectively and proactively sharing research findings in a timely manner. This includes making research findings freely available at the earliest opportunity and in accessible, plain language formats; health literacy principles should be applied to all forms of communication, particularly when disseminating research findings. Embargo periods may need to be reevaluated to avoid unnecessary delays in communicating findings.

3.2.2. Higher importance, lower feasibility

PEI training opportunities should be available for oncologists, other HCPs, research institution managers, and payers. Education topics could include PEI opportunities; finding patient research partners and realizing their value; communicating effectively with patient research partners; and reporting research findings in plain language. Existing PEI training should be efficiently utilized where possible and could also be embedded into educational programs for trainee HCPs and researchers. Although patients can be trained in research principles if they wish, this should not be mandated to avoid additional barriers preventing patients from PEI activities. Oncologists should also consider PEI at multiple “levels” to promote equity, diversity, and inclusion. For example, professional patient advocates who are thought leaders in the space could sit on a study steering committee, while patient research partners with less professional advocacy experience could help oncologists to better understand the impact of treatment schedules. For patient research partners wishing to be involved in providing strategic insights, it can be beneficial for them to have a minimum level of understanding of research processes, though this could also be provided as part of ongoing training and support. Some standardized training addressing common questions and concerns from the outset could also be beneficial, such as legal and compliance processes, disclosing conflicts of interest, confidentiality, adverse event reporting, and health literacy principles. Patient research partners could be trained in the clinical environment if they are interested, for example, by nurse navigators or PEI coordinators.

Finally, a single directory of existing patient research partners could facilitate PEI by connecting oncologists with interested patient research partners. HCPs should look to partner with patient advocates, patient advocacy organizations, and PEI agencies to circulate PEI opportunities. Many patients want to be patient research partners, they just are not always asked, do not feel empowered to ask HCPs, or need practical support to become patient research partners.

3.2.3. Lower importance, higher feasibility

Guidelines and standard operating procedures (SOPs) that could be implemented by research institutions need to be developed and more widely distributed. This could be facilitated by a proactive PEI strategy for each institution. Though this work will undoubtedly cost time and money, the costs of no PEI may well be greater in the long-term, including poorer health outcomes.

4. Discussion

This study has provided insights from oncologists and PEI experts on key barriers to implementing PEI in oncology research, highlighting potential solutions to help address some of the reported barriers. The high ranking of hypotheses D, E, and C by oncologists indicates that institutional and infrastructural barriers, alongside limited awareness of PEI in the research process, are pressing issues to address. The low ranking of hypotheses A and B by oncologists suggests they are interested in “how” to work with patient research partners, rather than “why” they should do so. As anticipated, most barriers are not specific to oncologists and have been previously documented across various disciplines [9,18,19,23,28–31]. Such barriers include time constraints, financial costs, identifying patients to work with, tensions in defining roles and responsibilities, building trusted relationships, avoiding tokenistic interactions, unbalanced power dynamics, communication using technical language, non-concordance between patient and HCP priorities, frustration if patients’ input cannot be completely incorporated, concerns patients may seek medical advice during PEI activities, accommodating and supporting patients, inadequate training for HCPs, and uncertainty regarding ethical aspects of PEI [9,18,19,23,28–31]. Our findings, together with existing evidence, highlight the importance of a “whole system approach” (p. 15) across therapeutic areas to tackle issues at all levels [32].

Highly important and highly feasible solutions recommended by the Working Group included specific funding for PEI, leveraging institutional PEI teams, practical and logistics support, incentivizing PEI, and training opportunities – existing programs of which include the Drug Information Association’s Patient Engagement Certificate Program [33] and PFMD’s Patient Engagement Training [34]. Highly important but less feasible and more difficult solutions included a listing of directories to facilitate connections between HCPs, patient research partners, and patient advocacy organizations. Examples of existing international directories include EUPATI Connect [35], Social Health Network Patient Leader Network [36], and Savvy Cooperative [37]. Developing guidelines and SOPs to improve PEI within research institutions was seen to be highly feasible but less important to address.

Our findings are consistent with a wider understanding of modifiable barriers to shared decision-making, including power imbalances, lower health literacy, and lack of access to scientific information [38]. These barriers have been highlighted in the European Union-funded Innovative Medicines Initiative PARADIGM Consortium’s roadmap to sustaining meaningful PEI across the medicine development lifecycle [39]. Findings also align with the NIHR’s six standards for PEI in the UK, including inclusive opportunities, working together, support and learning, communications, impact, and governance [40].

One of the fundamental challenges underpinning several barriers identified relates to demonstrating the long-term value of PEI to research institution managers and payers with strategic influence [19] in order to accelerate the implementation of effective PEI practice [41]. PEI is sometimes regarded as a “rescue strategy,” such as when teams are experiencing recruitment challenges. In actuality, PEI from the outset, including during protocol development, can help steer research programs in the most appropriate direction with tangible cost savings [42] while also improving patient-HCP relationships and health outcomes [43]. For this to happen, patients need to be recognized as equal partners in the research journey, not just as consumers.

To help demonstrate value and inspire HCPs with good practice, researchers should continue to add to the body of evidence demonstrating the value of PEI. Assessment of PEI in projects can be facilitated by several tools, including the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist [44] and the PFMD patient engagement quality guidance (PEQG) tool [17]. A recent retrospective assessment of Pfizer UK projects using the PEQG tool demonstrated the impact and benefit of PEI on industry-sponsored research; however, the need for better optimization of PEI within the pharmaceutical industry and more published examples were highlighted [45].

Interestingly, PEI can benefit patient research partners in several ways, such as making them feel empowered, enhancing self-management of their health, and enabling them to become more experienced with research [5,46]. Their engagement can also be altruistic and enables patient research partners to elevate the patient “voice” in research while also providing additional opportunities and renumeration [5]. The “everyone included” framework for medical education has shown that PEI not only improves the quality of research but also medical education and, ultimately, care too [30].

PEI can present several opportunities for HCPs, including motivation for understanding patients’ needs and priorities and professional development, for example, by coauthoring publications on advancing PEI. Proactively engaging and involving patient research partners can enhance HCPs’ reputation and trust with the wider patient community [47]. However, different local, regional, and national policies impact how HCPs are working, such as RVUs in the US and policies that limit face-to-face time with patients. RVUs are used by insurance providers in the US to reimburse HCPs according to the services they provide considering their productivity. For PEI to be more widely embedded, such policies need to be reviewed to ensure HCPs are not disincentivized from undertaking PEI, which can also benefit research institutions and payers manifold, including reputation, integrity, innovation, competitive advantages compared with other organizations, and more research funding opportunities.

Despite mixed views from oncologists on the value of PEI across all phases of research, including preclinical research, there is increasing recognition of the benefits early PEI can bring. Patient research partners have indicated that they wish to become involved during early phases, recognizing that while research may not progress, they wish to be involved in helping to advance scientific knowledge by setting priorities and informing study designs [48,49].

However, there are clearly several unmet training needs across the community regarding PEI. This begins with inconsistencies of terminology describing PEI [5] and the different experiences individuals bring to the conversation [1,6]. Research has shown that undergraduate medical students lack appreciation for PEI in research, despite awareness of the importance of PEI in the context of clinical care and treatment [50]. Embedding PEI training into degree programs could assist in educating the next generation of HCPs about PEI [51]. Cavaller‑Bellaubi and coauthors summarized different resources, guidance, and tools to support PEI as well as important platforms for sustaining PEI [39]; however, their article highlights the fragmented nature of such resources, cementing the need for a centralized repository to facilitate access to PEI materials for time-constrained HCPs. Patient research partners should also have access to training, which could include existing programs such as EUPATI’s Patient Expert Training Programme [52] and the Workgroup of European Cancer Patient Advocacy Networks Patients in Publications course [53].

In order to address HCPs’ concerns about effective PEI, further exploration of dedicated PEI support infrastructure from expert teams is warranted – whether they be employed by research institutions or supporting HCPs on a consultancy basis. Professional PEI support from such teams can help to bridge the gap between HCPs and patient research partners, facilitating PEI activities and ensuring some of the barriers identified in this study are addressed from the outset [54].

Adequate funding for PEI and budgeting for financial compensation of patients’ time is also needed in a transparent manner that does not introduce bias but, rather, acknowledges the intellectual contributions of patient research partners [31]. However, financial compensation appeared to be an impasse for some HCPs, consistent with existing research that found nonfinancial compensation, such as coauthorship and written acknowledgments, was more commonly reported than financial compensation [31]. Moreover, accepting payment may be an actual or perceived barrier for patient research partners, as in some cases this might have an impact, such as when receiving government benefits. While descriptive guidance on compensation is limited, FMV calculators do exist, such as the National Health Council’s calculator [55]. Different funders are actively encouraging PEI, and some have produced guidance documents for applicants [8].

Patient advocates, advocacy organizations, pharmaceutical companies, and other partners are actively trying to overcome many of the barriers raised in this study. Sharing solutions in a multistakeholder, noncompetitive manner is likely to benefit everyone involved. Future work to improve PEI may include awareness-raising campaigns, grants and awards to incentivize best practice, co-created guidance documents and training materials that could be developed and adapted for different contexts, and greater sharing of feedback and results in plain language.

4.1. Strengths and limitations

This study was not a systematic review of the literature or an in-depth qualitative study; rather, the research combined insights from oncologists with the knowledge of PEI experts to help widen the findings. Although the data are from a small sample of oncologists in the UK and US, they are likely to be representative and have broad implications on practice. Stratified analyses, for example, by country, are difficult because of the small sample size and would unlikely provide added benefit. There was also some overlap between the hypotheses presented to oncologists during phase II – for example, hypothesis A and “lack of precedent” in hypothesis E; similarly, hypotheses C and D were closely related, which may have caused some confusion for oncologists who were interviewed. The benefit of the overlap means that barriers and recommended solutions are more likely to have been captured.

5. Conclusion

Oncologists who want to engage and involve patient research partners may not know how to facilitate such interactions, and PEI may not be a priority when resources are constrained or when there is little institutional and infrastructural support for PEI. Change is required at the institutional level to incentivise PEI and support HCPs. Infrastructural changes are also needed to build a culture of PEI in all aspects and phases of research, including a clear value proposition by stakeholder groups and greater visibility and access to co-created PEI resources.

Supplementary Material

Supplemental Material
IFON_A_2514415_SM5760.docx (84.1KB, docx)

Acknowledgments

The authors thank the individuals who contributed to this study. This study was previously presented at the 39th Annual European Association of Urology Congress (April 5–8, 2024; Paris, France).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Funding Statement

This study was sponsored by Pfizer Inc.

Article highlights

  • While the value of patient engagement and involvement (PEI) in research is increasingly recognised, widespread adoption of PEI as an integrated part of all aspects and phases of oncology research has not been achieved.

  • We report findings from a three-phase study exploring barriers related to PEI in oncology research and possible solutions to help overcome these barriers. We conducted insights research with six oncologists, followed by qualitative interviews with 30 academic oncologists from the UK and US. A Working Group was then convened with 10 PEI experts to provide recommendations.

  • Oncologists identified practical barriers to PEI, traditional research dynamics preventing PEI, and a lack of understanding about approaching PEI in research as the most critical barriers in descending order of difficulty to overcome.

  • Solutions included leveraging institutional PEI teams, allocating funding for PEI, practical/logistical support for patient research partners, incentivising PEI, facilitating training, creating a patient research partner directory, and PEI guidelines.

  • Oncologists who want to engage and involve patient research partners may not know how to facilitate such interactions, and PEI may not be a priority when resources are constrained.

  • PEI needs to be incentivised, with a great level of support for HCPs to build a culture of PEI in all aspects and phases of research.

Author contributions

All authors made a significant contribution to the work reported including: Eamonn T Rogers, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Thomas G Bognanno, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Thomas Perkins study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Brittany Wolf Gianares, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Kristine W Schuler, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Jan Geissler, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article;

Vivian Larsen, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Dawn Lobban, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article;

Laura E Dormer, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing thearticle; Jacqueline Daly, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article; Jessica Scott, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article;

Eleni Efstathiou, study conception, design, and execution, acquisition analysis and interpretation of data, drafting and critically reviewing the article.

All authors approved the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.

Disclosure statement

Eamonn T. Rogers is employed by University College Hospital Galway. Thomas G. Bognanno is employed by Alliance Practice. Thomas Perkins is employed by, and is a current equity holder in, Envision Pharma Group. Brittany Wolf Gianares is employed by, and is a current equity holder in, Pfizer. Kristine W. Schuler is employed by, and is a current equity holder in, Pfizer. Jan Geissler is employed by Patvocates and was a paid consultant to Pfizer in connection with the development of this manuscript. Vivian Larsen is employed by Legacy Health Strategies. Dawn Lobban is employed by Amica Scientific and was employed by Envision Pharma Group at the time when the study was conducted. Laura E. Dormer is employed by Becaris Publishing. Jacqueline Daly has nothing to disclose. Jessica Scott is employed by Legacy Health Strategies. Eleni Efstathiou is employed by employment Houston Methodist Cancer Center, has provided consulting or an advisory role for AstraZeneca, Bayer, Janssen, Myovant Sciences, Sanofi, and Tokai Pharmaceuticals, has received honoraria from Astellas Pharma, Janssen, Merck, Pfizer, Sanofi, Takeda, and has received research funding from Janssen. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Medical writing support was provided by Simon R. Stones, PhD, ISMPP CMPP™, Elizabeth Perdeaux, PhD, and Laura Carlson JD, LMT, ISMPP CMPP™, of Engage Scientific Solutions Ltd, and funded by Pfizer Inc.

Ethical disclosure

The study was conducted in accordance with applicable regulations and the principles of the Declaration of Helsinki, and the European Pharmaceutical Market Research Association guidelines. Given this was a non-investigational study involving healthcare professionals, and the information obtained could not be linked to the participants and did not place them at risk, neither institutional review board/research ethics committee approval nor clinical trial registration was required. Verbal consent was obtained from participants involved in this study, including permission to publish findings with anonymized quotes in publications.

Data sharing statement

Upon request, and subject to review, Pfizer will provide the data that support the findings of this study. Subject to certain criteria, conditions, and exceptions, Pfizer may also provide access to the related individual de-identified participant data. See https://www.pfizer.com/science/clinical-trials/trial-data-and-results for more information.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/14796694.2025.2514415

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