Patient Advisory Committee Engagement in a Precision Medicine-Focused Public Oncology Conference: Case Report of Lessons Learned

Abstract

Introduction and objectives:

Public partnerships, engagement, and outreach are essential for meaningful knowledge dissemination and exchange activities in public settings. In 2024, we formed the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC). In March 2025, the ACC PAC delivered a successful public conference on precision medicine and cancer. Our primary objective is to share the perspectives gained, lessons learnt, impact of the event, and recommendations for future public conferences and engagement.

Methods:

Conference topics were identified by the ACC PAC. Speaker selection and conference promotion were done using various approaches and/or tools. The WebEx virtual platform was used to deliver the conference. This conference was open to all members of the public. A participant satisfaction survey was created using Qualtrics and distributed to registrants during and after the conference. Survey responses were summarized using descriptive statistics when appropriate. ACC PAC members who participated in the conference were encouraged to reflect on their experience.

Results:

The ACC PAC patient advisors were involved in all key aspects of this conference’s organization and delivery. A total of 24 speakers spoke during the conference on various cancer and patient-centered topics. Comments received and self-reflection exercise responses indicated a high level of impact and satisfaction associated with the content and delivery of the conference. Issues experienced, opportunities realized, and good practices implemented, as well as the feedback received helped us develop recommendations for improved delivery of future public conferences and better public engagement activities.

Conclusions:

In this Case Report, we discuss our learnings from a public conference that was designed and delivered by a public-scientist partnership. Overall, we were able to organize and deliver a successful public conference on precision medicine and cancer, yet there is still room for improvement in practical and technical areas. Our experience, self-reflection, and participant feedback that are described in this manuscript can help inform future public engagement and conference activities in Canada and beyond. Last, we ask decision-makers, such as governments, to provide sustained support for public partnerships and engagement in oncology.

Public Summary

The Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) is a patient – scientist partnership in Atlantic Canada focusing on precision medicine and cancer, advising the ACC researchers in research and public engagement activities, and actively working to engage with Atlantic Canadians in knowledge dissemination.

This group organized and delivered a one-day public conference on March 15, 2025. Topics included patient and family perspectives, precision medicine, cancer risk factors and screening programs, support services offered to cancer-affected individuals, clinical trials, and advocacy. The conference was open to all members of the public. Overall, this was an impactful event centred on patient and family priorities, experiences, as well as on information and support needs.

During and after the organization and delivery of this public event, we learnt by experience and from speaker and participant feedback. In this Case Report, we discuss these perspectives, lessons learnt, impact of the event, and recommendations for future public conferences. We also ask for sustained support and emphasis on public partnerships and engagement on cancer from decision-makers.

Keywords

Atlantic Canada cancer Patient Advisory Committee patient-centered precision medicine public conference public engagement public outreach

Introduction

Recent years have witnessed an interest in public and patient partnerships, advisory boards/committees, collaboration, and involvement as integral parts of research, community engagement and outreach, policy change, and advocacy.^1-9 In oncology, such practices can be effective ways to improve healthcare systems, design better and patient-oriented research studies and knowledge translation activities, inform stakeholders, and deliver effective public engagement and outreach activities.^6,8-14 In Canada, Strategy for Patient Oriented Research (SPOR) has been influential in integrating patient and family voices in all of these activities.^1,14,15

Considering the complexity of cancer as a disease, personalized prevention and treatment strategies are areas that need improvement. Precision Medicine aims to do this by considering the unique genetic, social, environmental, and other factors associated with individuals and their disease, such as molecular features of tumor tissues.^16-19 There are several examples of successful targeted therapies that are part of precision medicine and clinical practice.^18-21 However, further work is needed so that more patients can benefit from personalized and effective treatments, such as increasing awareness on precision drugs and ways to access them.

The Marathon of Hope Cancer Centres Network (MOH CCN) is a national collaboration between researchers, clinicians, and people with lived cancer experience in Canada.^22,23 Its primary goals are to form a national network of consortia on cancer and precision medicine, to advance precision medicine in Canada, to generate and analyze large-scale molecular data from cancer patients (e.g., DNA and RNA), to promote collaborations within and outside of Canada, and to train next-generation scientists and clinicians on cancer and precision medicine. The Atlantic Cancer Consortium (ACC) has been a part of this network since 2022.²⁴

The ACC is comprised of researchers, trainees, patient advisors, and clinicians from 4 Atlantic Canada provinces (New Brunswick [NB], Nova Scotia [NS], Newfoundland and Labrador [NL], and Prince Edward Island [PEI]). Atlantic Canada has a population of around 2.4 million people living on a relatively large land mass and a relatively higher cancer incidence rate than the provinces in the west coast.^25-28 Hence, understanding the factors that influence cancer risk and mortality in Atlantic Canada and bringing effective prevention, treatment, and support programs is an important goal. Of note, cancer is the leading cause of death in Canada with over 247,000 Canadians expected to be diagnosed with cancer and 88,000 Canadians dying because of it (estimates for 2024).²⁹ Of these, a total of 18,370 new diagnoses and 7470 cancer-related deaths are expected to occur in Atlantic Canada.

When the ACC became a part of the MOH CCN, one of its aims was to establish a patient advisory committee (PAC) to support ACC researchers and Atlantic Canadians. The ACC PAC was described in a recent publication in detail.³⁰ In short, this patient-scientist partnership aims to understand the patient and family priorities in Atlantic Canada and engage with Atlantic Canadians on cancer and precision medicine. Thanks to the diversity of its members, unique scope, and highly productive work, this public partnership is a successful model. It currently includes 11 patient advisors (individuals who were diagnosed with cancer or have had a family member diagnosed with cancer and were purposefully selected to maximize the diversity of the committee), a clinician scientist, a coordinator, a volunteer, and a cancer scientist. Although the ACC PAC was only formed in early 2024, this relatively new committee has already demonstrated remarkable activity and productivity. Specifically, so far the ACC PAC has identified the patient and family priorities in Atlantic Canada³⁰ and organized a public conference on cancer and precision medicine.

Public, academic, and medical events have different target groups, and as such, have different features. While organizing and delivering public outreach events and conferences, input, recommendations, and active involvement of patients and public members have an essential role in focusing the event on target groups’ needs and perspectives. This in turn helps to design and deliver events that will be useful, practical, and informative to the public and patients. Such events often highlight patient and public experiences and may involve healthcare providers, researchers, and leaders. Hence, they may also foster unique discussions and cross-pollination of ideas that may lead to new ideas, new approaches, new learnings, co-sharing, and co-learning among the participants.^10,31-34 In practice, patient led, co-led, or informed public conferences are becoming common, highlighting both the interest and value of patient and public involvement in knowledge exchange and outreach.^10,31-37

In this Case Report, we discuss the experience and insights gained by the ACC PAC through organizing and delivering the public conference on cancer and precision medicine. Specifically, we discuss: (i) the critical role of patient partners in the organization, delivery, and success of the conference; (ii) key elements of organization and delivery of this conference; (iii) the overall impact of the conference, and (iv) lessons learnt along with recommendations for future public conferences and public engagement. The information presented here can foster further discussions, help in the design and delivery of effective public events and knowledge dissemination activities, and support stakeholders/decision-makers and academic-public partnerships in Canada and globally.

Methods

Within the context of this partnership, public members are individuals with lived cancer experience recruited to the ACC PAC. Within the context of the conference: public conference means it was open to anyone freely, and sessions were designed to target and benefit the population-at-large and were not scientific or technical. Public member speakers were individuals, who may have lived experience and were not medical or scientific experts on the topics that they presented during the conference.

The ACC PAC members have taken active, decision-making and leadership roles during the design and delivery of this conference. For example, they discussed and identified the topics, they acted as conference co-organizers, opening remarks speaker, panel speakers, moderators, and promoted the conference within their circles. They also contributed to the self-reflection section of the manuscript.

Conference objective: Our primary objective was to increase awareness on precision medicine, lived cancer experiences, cancer’s impact, and cancer care and support programs available to Atlantic Canadians through a free, public event.

Identification of conference topics and speakers: The ACC PAC meetings are held virtually and in English, and led by the group lead. Six of its meetings included conversations about the conference topics, speakers, date and format, and other specific details (February 2024-February 2025). These discussions were documented in minutes and later summarized by 3 of us.

The ACC PAC decided the name of the conference to be Cancer is Personal: Humanizing Precision Medicine in Atlantic Canada. Four ACC PAC members agreed to form the organizing committee.

Starting in November 2024, candidate speakers who were suggested by the ACC PAC members, or identified through personal connections or online search, were officially invited to the conference as speakers. Most contacted individuals either accepted the invitation or referred the organizing committee to other eligible speakers. We aimed for representation of all 4 Atlantic Canada provinces (while also inviting speakers from other regions to encourage connections and discussions) and underserved communities (Indigenous Peoples, members of the 2SLGBTQIA+ community). Short biographies of select speakers can be found online.³⁸

The conference schedule was finalized in early March 2025 (Supplementary Table 1). The large number of speakers and variety of topics (some of which were presented in both English and French) led to the scheduling of concurrent sessions. Considering the significant Francophone population in NB³⁹ and motivated by the advocacy of 1 patient advisor, 3 sessions were delivered in French (Precision Medicine, Patient Navigator Program in New Brunswick, and Psychosocial Oncology and Family Counselling) while the rest of the presentations were delivered in English. There were 4 breaks scheduled (1 lunch, 3 health breaks). Most talks were allocated short times (~30 min).

Conference promotion: Various ways, tools, and connections were utilized to promote the conference, including social media posts and paid ads (Facebook); Memorial University, NLSUPPORT,⁴⁰ MSSU,⁴¹ ACC, and MOH CCN communications; local media article and radio interviews; personal contacts; and email invitations (e.g., sent to Ministers of Health of Atlantic provinces and select cancer organizations).

Registration, tech support, and conference platform: Registration was free, open to anyone interested in the conference, started in February 2025 (around 5 weeks prior to the conference), and was required to receive information about the conference (mainly, schedule, disclaimer, links to the virtual sessions, satisfaction survey). We worked with Memorial University’s Conference and Event Services (which dedicated 2 tech and 1 admin support staff for this purpose) for registration, reminder emails, setting up the virtual platform, delivery of the conference, recording of speeches, tech support, and circulation of the link for the conference participant satisfaction survey.

Our target population was Atlantic Canadians. A total of 255 people registered for this conference and selected 1 Territory and 10 Canadian provinces as their locations (Alberta = 3; British Columbia = 7, Manitoba = 2; New Brunswick = 40; Newfoundland and Labrador = 108; Northwest Territories = 2; Nova Scotia = 71; Ontario = 10; Prince Edward Islands = 5; Quebec = 5; Saskatchewan = 2), indicating that the conference promotions reached out not only to Atlantic provinces, but also the rest of the country. The conference platform was WebEx (meeting format)⁴² – this format allows for up to 1000 attendees. In order to ensure efficient delivery of presentations, speakers were offered test sessions (within the week prior to the conference) and provided with platform-specific information.

Conference delivery and moderation: The conference was a whole day event (9:30 am NDT-6:00 pm NDT). Two days prior to the conference, each registrant received an email with the final schedule including links for each session. The conference started and ended on time, complying with the set timeline. Four ACC PAC members acted as moderators. Public members acting as moderators were provided with a written guidance document about moderator activities and were offered a virtual session to clarify/address moderator roles and anticipated problems. One of us also acted as a facilitator in 5 sessions consisting of individual guest speakers or panels of speakers sharing their lived cancer experience, with the goal of conducting the sessions as a conversation to ensure the speakers felt comfortable at all times. Text chat box served as the main engagement tool, which was used to remind attendees of disclaimer statements and concurrent session links, to ask questions/address the participant questions, and to draw attention to the conference participation survey. Two sessions were pre-recorded as per the speakers’ preference, whereas the rest of the talks were delivered live. Except one, all conference sessions were recorded in real-time after obtaining permission from the speakers.

Conference participant satisfaction survey and summarizing the responses: An anonymous participant satisfaction survey was created in Qualtrics (Supplementary Table 2). This survey was adapted from a survey that was created for another public event.¹⁰ The link to the survey was posted in the chat box several times during the conference. In addition, after the conference, a follow up email containing the link to the survey was circulated to conference registrants. There were 36 responders between March 15 and April 1, 2025 (the response rate = 36 responders/83 attendees = 43.4%). Categorical responses were summarized by descriptive statistics. Responses to open ended questions were summarized by 2 authors. We also received feedback via other means, such as emails.

Self-reflection: We reflected on our experience and perspectives gained by organizing and delivering this public conference. We particularly focused on (i) what worked well, (ii) what needs to be done better next time, (iii) issues experienced/lessons learnt, and (iv) perceived impact of the conference.

Compensation: As per the Canadian Institutes of Health Research (CIHR) recommendations,⁴³ the public members of the ACC PAC are offered an honorarium in the amount of $500 (per annum). Each conference speaker was offered an honorarium in the amount of $200.

Post-conference dissemination: Following the conference, a brief recap of the conference⁴⁴ and the recorded talks were posted online⁴⁵ for free public access. These were also promoted in social media.

GRIPP2 checklist.pdf: The GRIPP2 checklist document is shown in Supplementary Table 3.

Results

During February 2024 to November 2024, ACC PAC worked on identifying cancer and precision medicine-related information that could benefit specifically individuals and families directly affected by cancer, and broadly members of the general public. These topics are listed in Supplementary Table 4.

Based on this information, the ACC PAC organized and virtually delivered the conference on March 15, 2025.

Our reflections as well as the feedback received suggest that this conference was an impactful and well-received public event. Below, we discuss the main lessons learnt, and perspectives and experiences gained:

Critical Role of Patient Partners in the Organization, Delivery, and Success of this Conference

As explained in Methods, this was a conference informed, co-designed and co-delivered by cancer patients and their family members. Specifically, ACC PAC patient advisors collaborated successfully and worked on this conference over the course of a year, not only in its design and identification of its speakers and topics, but also in its promotion, delivery, and session moderation. One of the patient advisors also delivered the Opening Remarks and 3 additional patient advisors acted as speakers during the conference. Their unique insight and active involvement are believed to be the driving force behind the patient-oriented nature, public uptake, and impact of this public conference.

Key Elements of Organization and Delivery of this Conference

Around 83 registrants attended the conference. While most of the participants were from Atlantic Canada, there were also participants from other parts of Canada. The attendance rate was 32.5% (83 attendees/255 registrants). We are not sure why only one-third of the registrants attended the conference, but factors may include changing priorities and schedules of the registrants. It is also possible that the event being offered free might have a role in this rate (i.e., paid events may be associated with a higher level of incentive to attend). In addition, some registrants may have preferred to access the recorded talks, rather than the alive event.

Twenty-four speakers contributed to the conference (4 of them also acted as moderators). Most speakers were from Atlantic Canada, while 3 speakers were from the Northwest Territories, Quebec, or British Columbia. Speakers included people with lived cancer experience (people with a history of cancer or their family members), researchers, healthcare providers (e.g., clinicians, nurses, social workers), community support organization leaders, and advocates. This variety ensured that a wide spectrum of perspectives was shared, and rich information was exchanged during the conference. Topics discussed during the conference are summarized in Figure 1.

Figure 1.

Main conference topics. E, F: These sessions were delivered separately in English and French.

Participants frequently asked questions and engaged with the speakers and other participants using the chat box. In response to participant queries, resources (such as contact information for the patient navigator programs and the Canadian Genetic Non-discrimination Act⁴⁶) were also shared in the chat box.

To increase access to knowledge shared during the conference, recorded talks were posted online for free public access.⁴⁵ A public recap was also posted on the MOH CCN website.⁴⁴

Impact of this Conference

Participant feedback was overwhelmingly positive: the option “Agree” constituted 73% to 100% of the responses provided to the closed-ended questions, with a mean (and median) of 90% (Supplementary Table 2). Self-reflection and responses to the conference participant survey indicated that the conference was valuable, impactful and successful in many levels. Example quotes are shown in Table 1.

Table 1.

What Worked Well – Selected Quotes From Conference Survey Results and the ACC PAC Members.

Quotes	Role in the conference
I felt I was not alone^a	Participant
Learning about Patient Navigators, Psycho-Social oncology, Canadian Cancer Society. . ..^a	Participant
Presented at a level everyone could understand, information was backed up, and all sessions were relevant^a	Participant
It was enlightening to learn about the research, the clinical treatment and the support systems that are out there for patients. So thankful to have been able to attend and am much less anxious as I await my own test results^a	Participant
The excellent manner by which three health professionals explained Precision oncology, Clinical trials and Genetic counselling.^a	Participant
Seeing and hearing the positive outcomes^a	Participant
This event was awesome. I’m not tech-savvy but I managed^b	Participant
Listening to Darrell Fox speak about his brother. What a great way to cap of a wonderful day!^a	Participant
Continue with timely info on the patient level^b	Participant
This event was absolutely informative and interesting It was holistic and I can’t think of any way to improve as it was so well done^b	Participant
The event itinerary was excellent to allow us to break if we needed^b	Participant
I am grateful for the shared knowledge and level of effort and commitment from each of the presenters who prepared and presented top level work for us	ACC PAC member and conference participant (email feedback)
Final selection of presentations included in conference covered a wide range of topics, with every single one being of great value/usefulness to people	ACC PAC member and conference participant (self-reflection)
I came to conference thinking I would be drained at the end of the day, but no, I was so much energized, happy, and excited to see the success of the event, listening to the speakers, seeing the engagement, all the compassion, stories, and knowledge exchanged. It was one of a kind experience	ACC PAC member and conference participant (self-reflection)
I know this conference will have a big impact on patients in the cancer community and their families. There was a lot of practical information about services to explore and who to contact. The lived experience sharing was also very inspiring. It gives hope to others when they can see that by reaching out for support and taking an active role in the journey, you can experience healing. . .. . ..The best were the sessions with speakers who had lived experience. . . The wide variety of topics covered shows that cancer is a life changing experience that encompasses physical, mental and emotional aspects of the patient.	ACC PAC member and conference participant (self-reflection)

Select participant responses to the feedback survey question “In your opinion, what were the THREE MOST VALUABLE aspects of this event?”

Select participant responses to the feedback survey question “In your opinion, WHAT CAN BE DONE to further improve this event next time?”

Key points of impact can be summarized as follows:

Patient and family stories that “put a face to cancer” and “resonated”

Focus on “importance of meeting patients’ needs”

Bringing “people together”

Advocacy and clinical services (such as, patient navigator program, psychosocial oncology, genetic services, activities of Canadian Cancer Society)

Closing keynote delivered by Darrell Fox, which deeply touched attendees. Terry Fox is a national hero who started the Marathon of Hope in 1980, and continues to deeply influence, touch, and inspire Canadians.^47-49 The sense of togetherness and admiration for Terry Fox were very palpable and inspiring

Being community oriented, topics being geared to patients, topics being “presented at a level everybody could understand”

Diversity of the speakers with different backgrounds

Collaboration between the conference speakers and organizers. Some of these connections were initiated for the purpose of this conference. Considering the speaker satisfaction, these collaborations are likely to continue in future events

Fostering further connections (e.g., after the conference one of the speakers was connected with a cancer-related organization and one participant looking for answers was referred to relevant organizations)

Excitement of the ACC PAC members about this successful public conference. While the ACC PAC is a relatively new team, members know that their achievements are significant and impactful. We are very motivated to do more and improve delivery of future public conferences on cancer and/or precision medicine

Overall, this was an event that connected participants in the room, exchanged useful knowledge that otherwise is scattered in multiple places, engaged the public, strengthened or initiated new regional collaborations, and motivated the ACC PAC to organize future public engagement events.

Lessons Learnt and Recommendations for Future Public Conferences

Our experience as well as the feedback received led us to appreciate good practices, identify lessons learnt, and formulate additional points to consider while designing and delivering public conferences and engaging with the public.

As summarized in Table 2, there were several practices that worked well with this conference (e.g., selected topics and their potential impact on population well-being, patient stories, plain language and informative presentations especially by healthcare providers, inclusion and diversity considerations regarding speakers, and patient-centered nature of the conference).

Table 2.

Good Practices Implemented, Lessons Learnt, and Recommendations for Future Public Events.

What was done well?	What could be done better?
Virtual events help increase accessibility and remove geographic boundaries	Hybrid events can be considered pending availability of interest and funding; in-person events can help networking (I missed the in-person aspect, though virtual can also have its benefits)^a
Patient-designed and delivered conferences take into consideration public preferences (such as frequent breaks, short sessions, and importance of lay language and public speakers), something we often do not see in academic or medical conferences	Conference could be divided into 2 days to prevent participant fatigue (A very long day)^a
Having French sessions and speakers from underserved communities (Indigenous, 2SLGBTQIA+) increases representation of underserved communities/regional language minorities	Speakers from underserved communities could have time allocated at different times for exposure (not in concurrent sessions). In addition, more language minorities can be included, strengthening not only representation but also public outreach (Don’t position minority groups talks against each other)^a
Tech issues while connecting or speaking (such as sharing slides) remain as an important consideration for speakers. Test sessions offered to the speakers have solved such problems in some cases prior to the conference	All speakers could attend the test session and prevent delayed speeches (experienced in ~two talks) (Some technical glitches. Speakers not ready on time was disappointing)^a
Having conversations with tech personnel and having tech support before and during the conference is critical for successful virtual event delivery	We need tech staff who will have more dedicated time to help deliver a tech-easy and public-friendly event
Concurrent sessions help offer diverse sessions to the participants	Concurrent sessions can limit attendance and speaker exposure; next time, we can have English and French concurrent sessions on the same topic
Chat box was actively used during the conference to promote engagement and sharing	Some speakers did not have enough time during their allocated time to address the questions in the chat box, but moderators could remind them to go back to that venue to address participant questions and comments. Chat box could be used to post digital resources in both official languages of Canada (English and French) (offer presenters the chat comments so that they could answer some not addressed)^a (Get a volunteer to add resources to the chat and provide these resources to the participants)^a
-	Accessibility could be improved by increasing visibility of presenter slides and speakers could be located close to cameras to allow lip reading (MOST Slides were not accessible. Too many words on a page)^a
-	ACC PAC could have social media accounts and intensify promotion of the conference in Atlantic provinces
-	We could select the date more carefully, as it fell in March break – this may have limited access to the conference
-	Tech issues continue to challenge speakers, organizers, and participants alike. Virtual platforms that are simple and easy to use are a must for adequate and appropriate reach to population, ensuring participant inclusion and equity, and fostering engagement
-	Better platforms with automatic translation services are desirable. While CC (closed captioning) option is functional in WebEx, the translation subtitle service does not work effectively (at least for French), limiting accessibility
-	More targeted promotion is needed when conference sessions are in languages other than the main language (in our case, in French). We could have posters and social media posts/ads in French to promote the conference to the Francophone population
Free, public events are good ways to reach out to the population at large	—
Putting the patients and families at the center of the conversation (e.g., starting the conference with patient and family member panel keynote) sets the “public” tone right at the beginning	—
Having speakers coming from different backgrounds helps deliver enriched and diverse perspectives	—
Active involvement of patient advisors not only empowers them but also strengthens their skills and/or elevates their voices	—
Increased awareness about cancer risk factors, screening programs, treatment, and genetic testing can help save lives	—
Prerecorded talks increase inclusion of speakers who otherwise may not be able to make it to the event	—
Conference talks that are recorded and made publicly accessible online helps accessibility and dissemination of knowledge to the population at large	—
Conference participant satisfaction surveys help understand what we do well and what can be done better next time	—

The information presented is based on authors’ self-reflection as well as the responses provided to the conference participant satisfaction survey.

Select participant responses to the feedback survey question “In your opinion, WHAT CAN BE DONE to further improve this event next time?”

On the other hand, effective tech support, better technical preparedness by speakers, posting of resources in the chat box for participant access (in both official languages of Canada – English and French), and platforms/conferences that integrate language translation/translators (or delivered in different languages, specifically, Canadian French) were among the recommendations made for future public conferences. Some participants also recommended shorter events. To ensure exposure of different underserved communities, 1 participant recommended having their representatives talk at different times, and to avoid scheduling them in concurrent sessions opposite to each other. Accessibility considerations (in terms of visibility/clarity of the slide contents and having speakers close to camera so that lip readers could follow better) were also brought up. We found that overall, concurrent sessions limited exposure and engagement.

Several topics of interest, such as the need for further public events on cancer and prevention, treatment options, precision medicine, peer support, post-cancer transition, palliative care, spiritual care, and effective self-advocacy were also suggested by participants. Additional suggestions included becoming aware of and accessing clinical services, such as the patient navigator program, clinical trials, and second opinions. All these recommendations will support future planning and delivery of virtual public events.

Discussion

An important Canadian collaboration that contributes to precision oncology while empowering patients is the Marathon of Hope Cancer Centres Network (MOH CCN).^22,23 This ambitious network project is an extension of the legacy of Terry Fox, a Canadian hero who started the Marathon of Hope after losing his leg to cancer at a young age.^47-49 In addition to being a strategic research network and enabling cutting edge research, an important mandate of the MOH CCN is to reach out to the population and elevate patient and family voices. Here we discuss the organization, delivery, and impact of a public conference on precision medicine and cancer organized by the ACC PAC,³⁰ a patient-scientist partnership within the MOH CCN. We also discuss the critical role of patient advisors in effective organization of this public event, lessons learnt, and recommendations for future events and public engagement.

Upon diagnosis of cancer, many patients and their family members need access to information (e.g., about the disease, treatment options, clinical trials) and access to support programs (e.g., psychosocial support, patient navigator program).^6,50-53 In addition, prevention and early detection of cancer (e.g., through smoking cessation programs, cancer screening programs, genetic counseling, and genetic testing in hereditary cancers) are critical for cancer control, population health and better health outcomes, as well as for the success of the precision medicine strategy. However, as one of the speakers with lived cancer experience said during the conference “we need to do better at every level.”

In Canada and globally, many teams and patient partnerships identified public outreach and uptake of health-related information as critical in addressing population needs, cancer control, and prevention of misinformation.^54-57 In addition, cancer-related information is often hard to reach and utilize. Therefore, information campaigns are needed not only to inform the population, but also to prevent cancer-related misinformation and disinformation. Accessible public events, such as public conferences, webinars, and symposiums^10,31,32,34 – including the event described in this manuscript – may help address this gap. That being said, to our knowledge, most of the public outreach on cancer is done by the charity/advocacy organizations and small groups like ours. While several groups^10,31,34-37 are enthusiastic about designing further public engagement and education events, the main responsibility lies on leaders of public health, healthcare systems, professional/medical organizations, higher education institutions, and governments. Hereby, we call on them to address this critical need by implementing effective public outreach strategies, dedicated long-term funding that sustain groups like ours and others, education/training programs, and information campaigns (Figure 2). In Canada, national and influential organizations, such as the Canadian Partnership Against Cancer⁵⁸ and the Canadian Cancer Society⁵⁹ may further their leadership role by advising the governments and professional organizations/post-secondary institutions and by providing (or continuing to provide) platforms and funding for reliable knowledge exchange and dissemination to members of the general public.

Figure 2.

Our recommendations for key stakeholders, including government, institutions, and healthcare systems in regard to initiating, practicing, sustaining, supporting, or improving public engagement and outreach.

Figure 3 summarizes the key take-away points for healthcare provider readers. Healthcare providers across oncology, primary care, and community health settings play a central role in communicating with, and educating patients and the public about cancer, both inside and outside of the clinic. The insights gained from this conference indicate that patient-informed public events can help in disseminating reliable health- and healthcare-related information. As demonstrated by our public event, collaborations among the public, healthcare systems, advocates, researchers, and healthcare providers are essential to achieving this aim. In addition, from our experience the use of plain language by clinicians in conference presentations (e.g., on cancer, Precision Medicine, and clinical services) is very well received. Plain language communications are critical for patient empowerment, education, and uptake of clinical services, and have positive implications not only for public members but also for healthcare services. Healthcare provider training in public communications and engagement should be encouraged and perhaps made a formal part of their training by being integrated in the medical education curriculum and made a continuous professional development requirement, if not already in place (Figure 2).

Figure 3.

Main take-away points for healthcare providers.

There has been an increasing interest in patient and public engagement in research, public outreach, knowledge translation and dissemination, and policy design so that the work undertaken can address patients’ (or the public’s) needs.^1-15 We believe that the practical information about the conference presented in this manuscript will inform the organizations of better, more inclusive, and more accessible public conferences targeting patients, families, and the population-at-large on health-related topics. In our experience, promotion of public events is often challenging, needing a variety of tools, ways, and effective networks¹¹ to inform the general population. However, we also believe that the connections formed and successful examples such as our conference help increase chances of outreach and interest by public members in attending such events. We think that the planning, organization, and delivery of the conference were successful because the perspectives and knowledge of people with lived experience were integrated in topic selection and conference delivery, and combined with knowledge of the other members in the group and speakers. However, research is needed to make reliable conclusions. While the perspectives and lessons learned here reflect our experience with a single event and therefore cannot be broadly generalized, we note that the experiences shared nonetheless contribute to a growing body of literature highlighting the value and importance of patient engagement in public knowledge dissemination.^10,31-37

Conclusions

In conclusion, here we share our experiences in organizing and delivering a public conference on precision medicine and cancer in Atlantic Canada. Overall, this conference was an impactful event which highlighted the priorities, lived experiences, and information and support needs of patients and their family members. This event facilitated knowledge exchange that benefits the general public, specifically those affected by cancer; fostered new meaningful connections; and enabled us to identify improved strategies for hosting future public conferences. The insights gained and presented in this manuscript offer valuable guidance to stakeholders/decision-makers, and anyone interested in public partnerships and designing effective, accessible, and impactful public events on topics of public interest.

Supplemental Material

sj-pdf-1-jpc-10.1177_21501319261420572 – Supplemental material for Patient Advisory Committee Engagement in a Precision Medicine-Focused Public Oncology Conference: Case Report of Lessons Learned

Supplemental material, sj-pdf-1-jpc-10.1177_21501319261420572 for Patient Advisory Committee Engagement in a Precision Medicine-Focused Public Oncology Conference: Case Report of Lessons Learned by Sevtap Savas, Georgia Skardasi, Aaron A. Curtis, Marcelo F. Martinez, John King, Cyndi Corbett, Judy Donovan Whitty, Gilles LeBlanc, Beverly Pausche, Jennifer Coish, Angela Hyde and Cara MacInnis in Journal of Primary Care & Community Health

Footnotes

Acknowledgements

We thank the past and current ACC PAC members for their valuable contributions to the organization and delivery of the conference, all conference speakers, moderators, and participants for making the conference a successful public event; Marathon of Hope Cancer Centres Network and funders for funding the conference; and Memorial University communications, NLSUPPORT, and MSSU for helping with conference promotion. Staff at Memorial University’s Signal Hill Campus Operations, Conference and Event Services were critical for successful delivery of this conference – we wholeheartedly thank them. Sevtap Savas is a senior scientist of the Beatrice Hunter Cancer Research Institute.

List of abbreviations

ACC: Atlantic Cancer Consortium

ACC PAC: ACC Patient Advisory Committee

CIHR: Canadian Institutes of Health Research

MOH CCN: Marathon of Hope Cancer Centres Network

MSSU: Maritime SPOR Support Unit

NB: New Brunswick

NL: Newfoundland and Labrador

NS: Nova Scotia

PAC: Patient Advisory Committee

PEI: Prince Edward Island

SPOR: Strategy for Patient-Oriented Research

ORCID iD

Sevtap Savas

Ethical Considerations

This work does not involve humans as research subjects. As such, no ethics approval was needed.

Consent to Participate

This work does not involve humans as research subjects. As such, no consent was needed.

Author Contributions

SS: conceived the idea; supervised the coordinators; helped identify the conference topics; chaired the conference organizing committee; moderated and facilitated several sessions of the conference; helped summarize the participant satisfaction survey; drafted, finalized and submitted the manuscript. GS: helped coordinate the ACC PAC; helped identify the conference topics; co-chaired the conference organizing committee; helped summarize the participant satisfaction survey; reviewed, revised, and helped draft the manuscript. AAC: helped coordinate the ACC PAC; summarized responses to the participant survey; reviewed and revised the manuscript. MFM: helped identify the conference topics; helped organize and deliver the conference; reviewed and revised the manuscript. JK: helped identify the conference topics; helped organize and deliver the conference; reviewed and helped revise the manuscript. CC: helped identify the conference topics; helped organize and deliver the conference; contributed to self-reflection exercise; reviewed the manuscript. JDW: helped identify the conference topics; helped organize and deliver the conference; reviewed the manuscript. GL: helped identify the conference topics; helped organize and deliver the conference; contributed to self-reflection exercise; reviewed the manuscript. BP: helped identify the conference topics; helped organize and deliver the conference; acted as a member of the organizing committee; reviewed the manuscript. JC: helped identify the conference topics; helped organize and deliver the conference; acted as a member of the organizing committee; reviewed the manuscript. AH: helped organize and deliver the conference; reviewed the manuscript. CM: helped identify the conference topics; helped organize and deliver the conference; reviewed the manuscript.

Funding

The authors disclosed receipt of the following financial support for the work described, authorship, and/or publication of this article: We gratefully acknowledge the funders that made the ACC PAC’s work and this conference possible: the Marathon of Hope Cancer Centres Network and various national and provincial funders of the ACC (), including the Terry Fox Research Institute, MITACS Canada, AstraZeneca Canada, Pfizer Canada, Hoffmann-La Roche Limited, the Beatrice Hunter Cancer Research Institute, the QEII Foundation, Research Nova Scotia, the New Brunswick Health Research Foundation, the New Brunswick Innovation Foundation, Memorial University of Newfoundland, and the Department of Industry, Energy and Technology, Government of Newfoundland & Labrador.

The funders had no role in the design, data collection and analysis, decision to publish, or preparation of the manuscript.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the work described, authorship, and/or publication of this article.

Data Availability Statement

The work described in this manuscript summarizes the work of a committee of people discussing their experiences with organizing and delivering a public conference. As such, there is no research data. All data generated or analyzed during this work are included in this article and its supplementary information files.

Trial Registration Number/Date

Not applicable.

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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