I really liked writing this one. Patients and people with lived experience are quickly making inroads into academic spaces, sharing their expertise and increasing innovation in research, policy and clinical trials. But many barriers to their effective involvement still remain. Here I delve into the world of academic publishing for patient partners.
Successful Healthy Cities, Healthy People event 2024.
On 12th November, myself and a team at Women’s College Hospital were delighted to host 6 speakers with expertise in digital health and fem tech for an insightful public event. The speakers covered topics from public health to social media and gynaecological health and our panel discussion fielded questions from our in-person and online audiences. We were also privileged to have Mayor Olivia Chow come to the event and give opening remarks.
This was the second annual Healthy Cities, Healthy People event and we are already looking forward to next year.
Canadian Institutes for Health Research grant for institutional patient engagement development
So happy to announce that myself and a small team at Women's College Hospital have been awarded a grant from the Canadian Institutes of Health Research to support three education and capacity building projects involving engagement of people with lived experience (PWLE - also sometimes referred to as "patients") at the hospital.
Following feedback from patient partners, community members and researchers, we identified three areas of need at the hospital that formed our projects:
DEI resources for PWLE.
Ethics training and resources for PWLE.
Along with collaborators at Pride in Patient Engagement in Research at UHN and a committee featuring PWLE will be working to host a symposium in (TBC, likely Spring 2025) about institutional gaps, approaches and collaborative opportunities to work together on the engagement of PWLE.
All three projects will be co-designed, developed and run with PWLE from a variety of different backgrounds and experiences as a core principle of this work. To underlie our commitment to this - around a third of our budget is allocated to providing honoraria, travel costs and expenses for PWLE involved in the three projects - this includes committees, focus groups, evaluation of our developed materials and funds to cover attendance and contributions of PWLE at our symposia.
Thank you to the CIHR for recognizing that well-done and equitable engagement of PWLE is vital for driving research and innovation in Canada and for funding projects like these.
Nature Precision Oncology Publication
It’s been a while. Life has been good, but very busy. A couple of delayed updates coming:
Firstly, I published my main work from my post-doc at SickKids hospital in Toronto in Nature Precision Oncology. You can access the pdf here for free. Truly a collaborative piece of work with the patient and family being staunch advocates and supporters of our work. It was a pleasure to get to know them a little in a meeting we had to celebrate the publication of this paper.
Presentation at UHN PiPER Patient Engagement Course
A pleasure to host a presentation and workshop yesterday focused on the Family Engagement in Research Leadership Academy course which I co-instruct on. We were happy to be at University Health Network's PiPER patient engagement conference to share some information about the course and one of it's key concepts, the five core competencies of family engagement in research.
tI was wonderful to talk to researchers at Cornell University last weekend as part of their 2023 "Social Issues in Community Engagement by Cancer Scientists" workshop. My talk was titled “The importance of engaging patients in healthcare research” and I discussed my own experiences as a cancer survivor advocate, as well as my current role in which I work towards involving patients and others with lived experience more comprehensively at the hospital.
But, aside from my participation, I'd like to highlight the overall program at Cornell for it's breadth of topics and true inclusion of several patient/survivor advocates from diverse background. This is incredibly well thought out and designed education and Cornell are ensuring that their young cancer researchers start their careers with a strong foundational understanding of patient engagement and social issues that people with cancer often navigate. You can see the program here.
New long read piece for Cancer World on CAR T cells.
Happy to share a piece that I've been working on for several months, but thinking about writing for at least 5 years. In the past few years, engineered CAR T cells for childhood B-cell leukaemia treatment have been a fantastic option for patients who relapse after conventional therapies. Not enough time has elapsed and not enough children have been successfully treated yet to fully understand their long-term side effects, but they seem to be gentler on patients than conventional chemotherapy treatment, which although successful, comes with a host of well-described long-term health impacts.
In this long-read piece, I explore whether CAR T cells could and should ever be trialed as first-line therapy for children with leukemia, replacing traditional chemotherapy.
This is by far the most complex article I've ever written, weaving together numerous ethical and scientific discussions as well as vitally important personal stories. I want to thank all of the interviewees in the piece for their contributions including a parent of a child treated with CAR T cells, an ethics specialist and two consultant pediatric oncologists. Also the fantastic editorial team at Cancer World for their help with this article. It took a lot of time to get right and I am grateful for their support and patience.
I hope you enjoy the article.
Family Engagement in Research Leadership Academy
It was so wonderful to be involved in this course as a co-instructor after taking it myself last year. I learned so much from the participants and other instructors and can't wait till the next cohort starts. You can learn more about the Family Engagement in Research leadership academy here.
Family Engagement in Research - leadership academy course, McMaster University.
I just completed the 10 week Family Engagement in Research leadership academy course run by McMaster University. It was a pleasure to be part of the inaugural class where we learned from each other and an amazing array of guest speakers and course facilitators about how to become leaders in patient/family engagement in research in Canada. I highly recommend the course and the precursor course to anyone interested in gaining skills and connections in this area.
New article for Cancer World
Happy to share my new article for Cancer World as part of my commitment to them as the North American editorial board member for 2022-2023. For this piece, I covered the recent Black in Cancer conference held at the science museum in London in October.
I’ve been following the work of Black in Cancer since their foundation in 2020 and reported on the initiative in fall 2020 for Forbes. It’s wonderful to see them go from strength to strength and I am looking forward to following their progress in the future.
Image credit: Maddalena Carrai for Cancer World.
First article for CancerWorld
I’m very happy to share my first article for Cancerworld as their North American editorial panel member for 2022-2023. The piece discusses the use of organoids for precision medicine and clinical decision making in oncology. You can read it here.
New job at Women's College Hospital in Toronto
Delighted to announce that I will shortly start a new role at Women’s College Hospital in Toronto as the Patient and Community Engagement Lead.
I have so many ideas already and I know there will be opportunity to work with people all over the world to come up with innovative and impactful initiatives for patients, family members and advocacy/community organizations.
It is a role which will use all of my research, communication and advocacy skills and I can't wait to meet my new colleagues and get started!
I don’t post most of my articles for Forbes Health here, but this one is particularly important as this population is generally underserved in both healthcare and research. Young adults with cancer and survivors have unique needs and are currently under served compared to their pediatric and older adult counterparts. So it was a pleasure to highlight this excellent research led by MD Anderson Cancer Center researchers and also fantastic advocacy and community-building in the form of the #AYACSM social media scheme co-founded by Emily Drake.
End of postdoctoral fellowship
Earlier this month, I finished my postdoctoral fellowship at The Hospital for Sick Children in Toronto. I moved to Canada in early 2017 with just two suitcases and a job offer and am so happy with the life I've built here. My postdoctoral fellowship, wonderful PI and colleagues have been a major part of this and I am incredibly grateful for the opportunity to have done impactful research with such a great team. The pandemic has affected everybody in research and it's been a tough couple of years, but I'm pleased to say that I'm writing up a couple of my projects for publication currently and I will stay involved with the group to advise on a few more ongoing projects I've been involved in.
I've also been lucky to find amazing research and patient advocacy communities, not only in Toronto, but all over Canada and am lucky to be involved in projects, advocacy schemes and organizations spanning several provinces. I will certainly continue this going forward. Everybody has been so welcoming it is sometimes hard to believe I have only lived here for 5 years.
I'll share some details soon of what's next for me, but right now, I will have some pre-planned and very needed time off to recharge and ready myself for my next challenge. I want to end this post by thanking some of the most important people who have contributed to my research over the last few years and that is the patients and families we work with and who generously donate their samples for our research. As a person who faced cancer myself age 8 and whose parents consented to my samples being used for research, I have always been acutely aware of the importance of using these samples to the very best of our abilities. The vast majority of my work over the past few years has used patient samples - ranging from healthy skin, blood and gastrointestinal tissues to leukaemias, colon cancers and brain tumor samples and my work simply would not have been possible without these donated samples.
Thank you to everyone who has supported me during this phase of my career, I am really excited for the future and a very rare month off :)
One last picture of some stem cells for good measure. With the right environment, they have infinite potential to become anything!
Invited talk to the NIH/NCI annual young investigator colloquium.
Wonderful to talk to young investigators at the National Cancer Institute (NCI) for their annual (virtual) Colloquium. I talked about cancer survivorship, late effects, patient engagement and my hopes for the future. Thank you for inviting me to speak.
Invited article for Nature Reviews Cancer "What cancer survivors can teach cancer researchers."
Delighted to share a new article I wrote for Nature Reviews Cancer on what cancer survivors can teach cancer researchers. In it I discuss survivorship, patient advocacy and open questions as how best to engage patients/survivors in research. I hope it contributes to ongoing discussions and progress in this area and welcome your feedback and thoughts!
Open access link here. Please do contact me for help if the link does not work.
All credit to the wonderful patients, survivors, advocates, family members and researchers who I've met over the years who do so much great work in this space. I am the only author noted on this piece, but really these two pages are the product of numerous conversations, discussions and meetings over several years.
Lots of work still to be done, but I'm positive about the future :)
New article for Forbes Health
I don’t post many of my articles for Forbes Health here (there are a lot of them!) but I really want to highlight this one as I think the work featured will become a seminal paper in the study of long Covid. A collaboration between Prof Michelle Monje (Stanford) and Prof Akiko Iwasaki (Yale) looking at the chronic neurological effects of Covid-19 infection. A potential mechanism is described and overlaps with the neurological effects of a type of chemotherapy called methotrexate. Fascinating work and a pleasure to highlight in Forbes Health.
New piece for the AACR's Cancer Discovery News
Every now and again a story comes along that just makes me smile. Sometimes it is a new scientific breakthrough that will save lives, or patient advocates succeeding in pushing for change. This story featured a new initiative led by St. Jude Children’s Hospital in the U.S. and the World Health Organisation to distribute childhood cancer drugs to the world and definitely made me smile. With thanks to Dr. Downing, Dr. Alcasabas and Dr. Ilbawi for the fantastic interviews. I could have written 5 stories with everything they told me. Such an exciting initiative that will undoubtedly save lives.
Invited talk to the National Cancer Institute Pediatric Oncology Branch
Last week I gave an invited talk to the NCI pediatric oncology branch about patient, survivor and care partner involvement in research. It was wonderful to talk to so many academics and medical professionals already so invested in including patients and survivors in their work and who were willing to take the time to learn more. I also spoke a little about my own experience with childhood cancer and the importance of survivorship research for people like me. My last slide is below.
