ACORI RESEARCH REVIEW: MARCH 2024

March is Colorectal Awareness Month

This March, we recognize Colorectal Cancer Awareness Month. Colorectal cancer is the 4th most common cancer diagnosed in men and women in the US, with approximately 150,000 new cases in 2023. Although the median age of diagnosis is 66, colorectal cancer is slowly becoming a young person’s disease. The incidence and mortality rates of colorectal cancer have been steadily increasing in adults younger than 50 (known as “early-onset”) while decreasing in those over 50. Researchers predict that by 2030, colorectal cancer will be the leading cause of cancer death in young adults ages 20 – 49. These alarming trends prompted a change in the preventative screening guidelines several years ago to initiate screening at age 45 instead of 50, and some researchers are even advocating to start screening earlier than that.

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The cause behind this epidemiologic shift towards early-onset cancer remains largely unknown at this time. Though many cases have identifiable risk factors such as family history of colorectal cancer or ulcerative colitis, the majority of cases of early-onset disease are sporadic and unrelated to any known genetic alteration. However, there are similarities in disease characteristics as early-onset cancer tends to be found in the left colon with more advanced features. Lack of awareness about the possibility of cancer and delays in diagnosis can contribute to more advanced disease upon diagnosis.

Much of the ongoing research in early-onset colorectal cancer is focused on elucidating causes and risk factors to explain the changing patterns. Diet, gut bacteria, and inflammation have been popular topics of study among researchers. Significant intake of refined, high fat, or high sugar-sweetened foods or beverages was found to be associated with a higher incidence of early-onset disease. In a similar vein, obesity may also be linked to early development of colorectal cancer. Researchers have also reported that the gut microbiome profile of early-onset cancers is distinct from late-onset disease, suggesting that there could be a unique role of these microbiota in disease progression. The interplay between diet, gut microbiota, and inflammation in the development of early-onset colorectal cancer continues to be an intriguing area of research.

Young adults battling colorectal cancer face unique challenges in their disease course, such as diagnostic delays, financial toxicity, and long-term survivorship concerns. Various opportunities exist along the cancer journey for clinicians to help reduce the burden of early-onset disease. Screening conversations should start in early adulthood along with patient education regarding symptoms and the importance of quick follow-up. Before treatment, providers should conduct universal Lynch testing and genetic counseling, discuss fertility preservation, and provide resources for financial and psychosocial well-being. After treatment, survivorship follow-up consists of surveillance for recurrence or secondary cancers, sexual health optimization, and management of long-term treatment toxicity. Advocacy groups, such as Colorectal Cancer Alliance, Fight Colorectal Cancer, Colon Cancer Coalition, and others, offer a myriad of resources and support for patients fighting colorectal cancer.

Addressing Underserved Groups with Multiple Myeloma

Multiple myeloma (MM), an incurable malignancy of the plasma cells, impacts approximately 170,000 adults in the US. Although the treatment outcomes for myeloma have improved significantly in the last few decades, the improvements are not equally felt by all groups of patients. Various underrepresented groups with MM remain at a disadvantage when it comes to access to treatments and overall outcomes. Dr. Cerchione and her team recently examined these disparities in a comprehensive analysis of underserved patients battling myeloma and discussed how we can better manage these populations.

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By and large, myeloma primarily affects older adults: the median age of diagnosis is 69, and more than half of all newly diagnosed individuals are 65 years or older. Not only are older adults more likely to be diagnosed with myeloma, but they also fare worse than younger patients. There continues to be a distinct survival gap between younger and older adults, with the former representing much more of the patient population alive at 5 years (69% vs. 40%). Moreover, adults 70 years old comprise nearly three-quarters of those dying within 6 months of diagnosis.

Older adults experience many barriers to optimal treatment, from complex medical comorbidities to psychosocial hurdles such as lack of caregiver support and the influence of ageism. Ageism, defined as the “stereotypes, prejudice, and discrimination towards others or oneself based on age”, may play out in the context of MM in clinical trials due to restrictive age-based eligibility criteria. In a more general sense, a national survey of older adults found that the odds of fair or poor physical health increased by 1.13-fold with an increasing number of everyday ageism-related events. It is important to pause and consider the covert impact of ageism when managing patients with myeloma.

We may not be able to change an older patient’s medical comorbidities or innate ability to tolerate treatment, but we can and should factor in a global assessment of their physical health, treatment goals, and psychosocial barriers to promote shared decision making and equitable care. Frailty scoring systems, including the International Myeloma Working Group’s frailty score, Revised Myeloma Comorbidity Index, and the Facon simplified frailty scale, can be used to assess an older adult’s fitness level, and help to predict treatment toxicity, rates of treatment discontinuation, and efficacy outcomes in transplant-ineligible populations. In some cases, clinical trials are also utilizing these tools to assign therapies based on fitness level. Frailty scores, while helpful, still have their limitations and should be used alongside other considerations to inform shared decision making.

Clinically, therapeutic options have expanded for older patients who are transplant-ineligible. The triplet regimen of daratumumab, lenalidomide, and dexamethasone was found to be tolerable and effective for older adults, with nearly half of the study patients being 75 years old and deemed frail. Bortezomib, lenalidomide, and dexamethasone may also be considered in this patient population, but with careful consideration of the risk for neuropathy and falls. Ongoing trials such as the phase III Frailty-adjusted therapy in Transplant Non-eligible patients with newly diagnosed Multiple Myeloma (FiTNEss) may help to further elucidate optimal treatment approaches for this population.

The second underserved population discussed in the article are underrepresented racial-ethnic groups, such as African American (AA) and Hispanic patients. AA patients comprise approximately 20% of all MM patients in the US. Interestingly, previous reports have implied that myeloma patients with African ancestry could theoretically have better survival outcomes than their European counterparts on a purely biological basis due to a lower incidence of certain high-risk mutations. However, such outcomes have not been consistently demonstrated in studies, suggesting that other factors may play a role in shaping the overall outcomes of these patients. One study reported that AA patients were referred for stem cell transplant significantly later in their disease course compared to White patients. AA patients, in addition to Hispanic patients, were found to have a longer time from initial diagnosis to therapy initiation than White patients (median: 5.2 and 4.6 versus 2.7 months, respectively). Furthermore, AA patients were significantly less likely to receive treatment with bortezomib in one study. Treatment underutilization and delays in certain patient populations negatively impact their overall outcomes.

In cancer clinical trials, there has long been a trend of low accrual rates among racial-ethnic minorities, leading to underrepresentation of these groups and an incomplete understanding of how they respond to and tolerate therapies. Within myeloma care, efforts are being made to address these disparities and design trials that are more inclusive and accessible to traditionally underserved populations.

Lastly, patients with renal impairment can also face worse outcomes including an increased risk for mortality, delays in starting treatment, and higher incidence of secondary complications. Upon diagnosis of myeloma, 20% - 40% of patients have been reported to have renal impairment, which may naturally worsen due to the disease course or aging. As this is such a prominent population within myeloma, it is important for clinicians to tailor treatments appropriately to these patients. Lenalidomide and pomalidomide-based regimens are effective in renally impaired patients, with dose adjustments as indicated for lenalidomide. The proteasome inhibitors can also be used in renal impairment, and in fact, bortezomib-based treatment has been associated with rapid renal response even in those requiring dialysis. Thus far, the efficacy of immunotherapy agents in myeloma has also not been affected by impaired renal function.

As the treatment landscape of myeloma continues to develop, it is important for clinicians and researchers to understand the complex dynamics of these underserved populations in order to optimally address the disparities.

Advances in Kidney Cancer Research

The incidence of renal cell carcinoma (RCC) continues to rise, with an estimated 81,800 new cases in 2023. While the majority of cases are diagnosed as localized disease and have favorable prognoses, the minority with metastatic disease have dismal long-term outcomes. Many advancements have been made in recent years in the treatment of RCC, including the effective combination of immune checkpoint blockade and angiogenesis inhibition and the approval of a novel HIF-2 inhibitor for von Hippel-Lindau (VHL) disease or advanced RCC. Despite these advancements, RCC remains a challenging cancer to understand and treat, with complex metabolic pathways, low response rates to immunotherapy approaches, and high rates of resistance.

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The American Association for Cancer Research saw the need to bring together clinicians and scientists from the field to discuss current research, ongoing challenges, and future directions of RCC, prompting the establishment of the AACR Special Conference on Advances in Kidney Cancer Research. Dr. Celeste Simon, the Arthur H. Rubenstein, MBBCh, Professor and scientific director of the Abramson Family Cancer Research Institute at the University of Pennsylvania, and co-chair for the conference, noted that the “meeting was conceived with the goal of bringing together investigators from the entire spectrum of research on kidney cancer, from basic scientists to clinicians”.

The inaugural conference took place this past June in Austin, Texas and featured 8 plenary sessions covering the following topics: new therapeutic targets, new paradigms on treatments, modeling kidney cancer, targeting epigenetics in kidney cancer, targeting tumor metabolism in kidney cancer, new genomic and proteomic approaches in kidney cancer, subtypes of kidney cancer and therapeutic implications, and immunotherapies and combinational therapies in kidney cancer. Sir Peter J. Ratcliffe, a Nobel laureate of 2019, delivered the keynote lecture for the inaugural conference on his work in the hypoxia inducible factor pathway and its role in tumorigenesis in the setting of VHL-associated RCC. Abstracts from the 2023 AACR Conference on Advances in Kidney Cancer Research can be found here.

Expanding Cellular Therapies in a Community Setting: An Interview with Dr. John Powderly, II

Dr. John Powderly II, Medical Oncologist, Certified Physician Investigator, and Founder and President of Carolina BioOncology Institute and BioCytics, realized early on in his medical career that he felt a strong passion for cellular therapies. As a 4th year medical student interning under the mentorship of immunotherapy pioneer Dr. Steven Rosenberg at the National Cancer Institute, Dr. Powderly first started working with cellular therapies in the mid-1990s and has since dedicated his career to this therapeutic area. Shortly after completing his oncology fellowship at University of North Carolina, Chapel Hill, Dr. Powderly founded the Carolina BioOncology Institute (CBOI) in 2005 as a community-based clinic specializing in early phase immunotherapy and cellular therapy trials. Located in Charlotte, North Carolina, CBOI is the only independent phase I cancer center with cellular manufacturing capabilities on the east coast and serves as a regional hub for access to phase I trials in the community setting.

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What makes CBOI stand out, however, is not only its unique position as a community-based phase I clinic, but its connection–quite literally—to its sister company, BioCytics. While patients are coming to the clinic on one side of the building for their treatments, research scientists, biomedical engineers, and laboratory technicians are actively processing and developing cells for therapeutic purposes on the other side of the building. This non-patient-facing side is known as BioCytics, a biotechnology company that was founded alongside CBOI in 2005 as the second-half of a long-term vision to bring cellular therapies directly to patients.

The name of the company is no coincidence, as it translates to the “applications of living cells”, reflecting the purpose of the two sister companies. Although CBOI and BioCytics are two separate organizations, they are essentially two sides of the same coin. Simply put, the goal, as Dr. Powderly explains, is “to be a single facility to leukapherese, grow immune cells, and dose patients in Phase I studies”. This model is known as a “Human Applications Laboratory”.

Currently, the manufacturing and processing of cellular therapies is fraught with challenges, such as maintenance of the cold chain, shipping logistics, high costs, and timely delivery, which greatly limit the widespread adaptation of these therapies. Having the ability to process cells across the hall from the bedside—as is the case at BioCytics and CBOI—drastically circumvents many of these traditional challenges. By removing the complexities of the supply chain, the organization cuts down on costs, maintains higher viability of cells, reduces scheduling issues, and improves time to treatment delivery.

Moreover, BioCytics has biobanking facilities so patients can store their immune and/or tumor cells for future use. The 50 employees across both sites are also cross-trained in all aspects of their respective workplaces, meaning that an oncology nurse is able to administer phase I therapeutics, help coordinate studies, and also conduct leukapheresis; and lab scientists and biomedical engineers are able to process leukapheresis-derived immune cells, grow them in culture, perform flow cytometry, and cross train in the clinical lab. This level of cross-training and competency in a highly regulated environment allows the point of care manufacturing to run very efficiently. All in all, Dr. Powderly believes that this model of decentralized manufacturing is the key to making cell therapy a reality for more patients.

In regard to the specific type of cell therapy, BioCytics has its own take on that as well. Unlike CAR T-cell products which must be genetically engineered to recognize certain cancer antigens, BioCytics aims to amplify the natural immune cells that best respond to a patient’s tumor. Otherwise known as their Autologous Adaptive Cell Therapy (AACT) Platform, the idea is to collect a patient’s immune cells along with a tumor sample, isolate the various immune cell fractions (i.e., reinvigorated T-cells, memory natural killer cells, gamma-delta cells, tumor infiltrating immune cells, ex vivo lymph node cells), determine which of these cell types react to the tumor sample, and grow the specific immune cell fractions that are most effective against that tumor. Essentially, this approach harnesses a patient’s natural adaptive immune response and enhances its activity many-fold.

Compared to other adoptive cell therapies currently on the market or in pipelines, such as CAR-T, T-cell receptor gene therapy, tumor-infiltrating lymphocytes, or natural killer cells, BioCytics’ AACT platform provides the following advantages: it is entirely autologous; it does not require genetic engineering; it is not likely to cause cytokine storm; it is logistically easier and less expensive to administer; it has a shorter manufacturing time, and is manufactured in a warm chain without freeze/thaw steps. Furthermore, it is an adaptative and iterative process that allows for repeat dosing and reinvigoration of immune cells in the event of tumor escape.

In theory, more immunogenic tumors might respond better to certain immune cells upfront, but the distinct benefit of this approach is that different cell types can be employed based on the specific tumor. It is what Dr. Powderly and the FDA are calling “individualized” medicine, a new term that transcends personalized medicine. Whereas personalized medicine takes into account a patient’s genetic profile to guide decisions, individualized medicine is completely customized to the patient—just as a tailor creates a bespoke suit to the specific measurements of a client, so too does this approach design a cell therapy unique to a patient and their cancer.

At this time, the BioCytics AACT platform is still in pre-clinical development. In 2007, the company opened its “in-house lab study” (BioCytics 0001), with the goal of investigating the collection of leukapheresis-derived circulating tumor cells, immune cells, and progenitor cells. As of December 2023, 860 patients have been enrolled onto this study, and impressive results have been observed across various tumor types showcasing high tumor killing rates of autologous reinvigorated T cells co-cultured with tumor (internal data). The company is now preparing for its BioCytics-0002 IND submission to the FDA in late 2025/early 2026 to open a phase I trial for the AACT platform with feedback algorithms that interface the cell factory data to clinical patient outcomes data using machine learning data science. This phase I trial will be a “platform trial”, which investigates the entire process instead of a singular product. BioCytics has a goal of raising $7 million in 2024 to cover expansion of the program including biotechnology, personnel and training, additional software, and more.

An interesting aspect of the pending IND submission is that it will be an “open” IND, which is a new concept that the FDA has developed to describe studies that are open indefinitely, as recently allowed in rare disease clinical trials. Ultimately, BioCytics intends for this process to be a perpetual phase IB study that is continuously undergoing improvement and optimization. As the company enhances its technology and operations year after year, the AACT process will be upgraded so that each iteration is better than the last. In the long run, this process is not meant to be marketed as a single “product”, but rather as a new modality of cellular therapy as a professional service for patients. According to Dr. Powderly, patients “have the right to demand custody of their own immune cells to be individualized and manufactured and given back to them”.

In the long-term vision of Dr. Powderly, autologous adaptive cell therapy will not be limited to a 30,000 sq ft building in North Carolina. The ultimate goal is that patients across the country—and even around the world—will be able to utilize these services one day. Once the platform trial has opened and demonstrated success at BioCytics, Dr. Powderly and his team plan to scale this platform across the country, bringing it to every major metropolitan area and making it accessible for all patients. Community-based cancer clinics will play a significant role in the expansion of AACT, as these treatments would primarily be outpatient.

Community practices that share in BioCytics’ mission to bring cellular therapies closer to patients may have the opportunity to collaborate or partner with BioCytics in the future. Multiple sites can operate under the same open IND and conduct point-of-care manufacturing of cell therapies, but there must be an integrated quality control program and 100% accountability at all times, in which the process at each site is qualified and validated by the primary IND holder (in this case, BioCytics). Dr. Powderly notes that he already has a growing list of programs throughout the country and around the world who are interested in collaborating.

What started out as a bold idea 30 years ago in a young medical student has now become a novel enterprise poised to disrupt cancer treatment as we know it. BioCytics is diligently paving the way into the next era of individualized medicine, and we are excited to see what the next ten years will bring.

Improving Clinical Trial Accessibility: Spotlight on Flatiron Health

It is well known that rates of cancer clinical trial enrollment are low: less than 10% of adults with cancer participate in cancer treatment trials, and most of these participants hail from academic institutions. Although a vast supply of community oncology programs are making vital contributions to the world of cancer research, there remains opportunity for even more impact. Countless barriers exist to conducting successful clinical research—it is hard enough at times for large academic centers to carry out research, and exponentially harder for smaller community programs with significantly fewer resources.

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These days, many technology companies exist to support clinical research, but few are focused solely on oncology. Cancer clinical trials can be more complex than other therapeutic areas and require a customized approach to optimizing their operations. Flatiron Health, a healthcare technology company founded in 2012, is a cancer-focused organization that provides technology and services to advance cancer care, cancer research, and cancer drug development around the world. Its mission is to “build a world where technology and science close the gap between care and research” in the field of oncology. Driven by empathy for people with cancer and the clinicians that serve them, Flatiron is working hard to change the world of cancer research.

To streamline the efficiency and accuracy of clinical trial data capture, Flatiron has developed a tool known as Flatiron Clinical Pipe™, which allows for “point and click” automated transfer of data from the electronic health record (EHR) source to the electronic data capture (EDC) system. With Flatiron Clinical Pipe™, three types of data are able to be transferred via workflows supported by the tool: routinely captured structured data (i.e., labs, vitals), trial-specific data tracked through electronic forms provided by the tool (i.e., adverse events, tumor assessments, concomitant medications), and machine learning-assisted abstraction of unstructured data (i.e., physical exam findings, cancer history). Clinical Pipe™ can be integrated into numerous EHRs (OncoEMR®, Cerner, Epic, etc.) and connects with multiple EDCs. With this solution, clinical trial staff can spend less time on data entry and more time on patient care. In a world where the average late-phase cancer trial consists of 3.5 million individual data points per protocol, the ability to transfer data seamlessly and efficiently with Flatiron Clinical Pipe™ is a game-changer for trial operations.

For community oncology programs that want to get started with clinical research or seek to optimize their trial operations, technology paves the way for conducting fulfilling research. Whether it’s through Flatiron or another system, some of the services and products most helpful to oncology programs include tools that help sites screen patients for trials, tools that enhance data transfer, and tools that facilitate electronic consents or remote monitoring. Although there can be barriers to new technology adoption, such as system installations and staff training, many community oncology practices are finding that the benefits of improved efficiency and accuracy with the use of technology strongly outweigh the learning curve for onboarding. Overall, community oncology practices should feel empowered to evaluate and choose the right technology tools to help run trials, accrue more patients, and reduce staff burden.

Dr. Ivy Altomare, Senior Medical Director at Flatiron Health, strongly shares in the belief that technology is the key to streamlining clinical trial execution and expanding trial accessibility. Prior to joining Flatiron in 2021, Dr. Altomare worked as a medical oncologist in the Duke Cancer Network, where she practiced primarily in rural settings. Having worked with underserved populations for many years, Dr. Altomare developed a strong passion for extending clinical research opportunities to patients who do not have easy access to large academic centers. She feels fortunate to have joined Flatiron at a time when the company was making large investments in technology and services to accelerate the efficiency and representativeness of cancer clinical trials.

Dr. Altomare still practices at the Durham Veteran’s Hospital, but now spends the majority of her time as the clinical lead of Flatiron’s Research Network. She and her team conduct research on the use of technology to improve study efficiency, and the impact of community sites and networks on trial diversity. For example, last year, Dr. Altomare et al. reported on the demographics of patients enrolled in cancer trials at academic sites compared to community sites. Using the Flatiron Health de-identified database, the team evaluated over 28,000 trial participants, about half of whom were treated in academic sites and the other half community. In this analysis, Black patients were 32% more likely to have been accrued by community sites, older patients were almost twice as likely to have been accrued by community sites, patients without known insurance were more than twice as likely to have been accrued by community sites, and patients with the lowest socioeconomic status were almost twice as likely to have been accrued in the community. These results underscore the ability of community oncology research to address long-persistent inequities in clinical trial participation.

Most recently, Dr. Altomare and her team at Flatiron have been collaborating with ACCC on a research project investigating the types of trials opened in community settings over the last 2 years. The idea for this project originated with the recognition that the types of trials best-suited for a community setting are likely different from the kinds of trials run at academic centers. They have collected information including the type of sponsor, target accrual, study type and phase, tumor type, and more, and have analyzed the characteristics of over 1000 trials open across community practices within the Flatiron Research Network—of which at least 30% are also ACCC members. At this time, the research analysis has been completed and the team hopes to present this work at an upcoming conference. However, the study results do confirm the robustness of community oncology research programs and can help to educate sites and sponsors on the types of trials most viable in the community.

These research findings, and more, demonstrate that community oncology programs have a tremendous amount of insight to offer to the greater research community. By optimizing community research, studies may accrue faster, accelerating the trial process and ultimately delivering new therapies to patients more efficiently. But even more importantly, expanding research access in the community setting promotes equitable care by allowing broader access to novel cancer treatment. For these reasons and more, Flatiron and ACCC are committed to helping community oncologists run sustainable and successful research programs through the use of technology, innovative services, and networks that facilitate shared learnings.

An Approach to Improving Cancer Outcomes in Patients with Mental Illness

When healthcare providers think about cancer clinical trials and the types of people who are involved in conducting those trials, they probably think of physicians, study coordinators, data monitors, research nurses – and maybe a few other roles. Chances are, they are not thinking of a social worker. Social workers themselves may not even recognize their own potential impact in clinical research. In honor of National Social Work Month this March, we interviewed Amy Corveleyn, MSW, LICSW, Clinical Social Work Lead at Dana Farber Cancer Institute, Chair of the Association of Oncology Social Work’s (AOSW) Research Special Interest Group, and new Research Director for AOSW, about her research work and her views on the importance of the social work perspective in oncology research.

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Amy first got her start in clinical research about 8 years ago, when she met psychiatrist Dr. Kelly Irwin at Massachusetts General Hospital, where Amy had practiced for 18 years before transitioning to Dana Farber this past fall. At the time, Dr. Irwin was looking for a social worker to participate in a research trial assessing a collaborative care model to improve cancer outcomes in adult patients with mental illnesses. Compared to patients with cancer but without mental illness, those with both cancer and serious mental illness are more likely to be diagnosed with metastatic disease, less likely to receive timely treatment, and more likely to die from certain cancers. As someone who has long been passionate about mental health in the oncology population, this was the perfect study for Amy to make her first foray into the world of clinical research.

The care delivery model in this study, aptly named “Bridge” for bridging the gap between psychosocial care and cancer care, consisted of a psychiatrist and case manager (i.e., licensed clinical social worker) who conducted psychiatric assessments, performed patient and caregiver outreach, worked with the community providers and oncology team to devise an appropriate treatment plan for the patient, and monitored the patient’s care over a 12-week period. The goal of the intervention was to facilitate the initiation and completion of cancer care in patients with mental illnesses. As the case manager, Amy was the primary contact for patients and caregivers throughout the study and monitored psychiatric symptoms and cancer care simultaneously.

In their pilot study, 30 patients were enrolled, with psychiatric diagnoses including bipolar disorder, schizophrenia or schizoaffective disorder, and severe major depression. The Bridge clinicians worked with the oncology team to develop a tailored approach to psychiatric and cancer treatment for all patients. The majority of patients valued meeting with the case manager, and the majority of caregivers reported that the Bridge interventions addressed caregiving challenges. Oncology clinicians felt that the interventions positively impacted cancer care for almost all the patients, and that most patients received the same cancer treatment intensity as other patients without serious mental illness. Notably, 5 out of 6 patients who initially declined cancer treatment or had a delay in care received all recommended cancer care during the Bridge intervention period. The promising results from this initial pilot have led to the development of a randomized controlled trial evaluating the Bridge collaborative care model over a 24-week period.

As a spin-off of the original pilot study, Amy also conducted another research project alongside her psychiatry colleagues to assess the caregiver experience in patients with serious mental illness and cancer. Amy and her team interviewed 13 caregivers in this case series, the majority of whom were female and family members of the patients. Three major themes emerged around caregiving in this special population: challenges, rewards, and lessons learned.

In regard to challenges, caregivers recalled how mental health symptoms added another layer of complication to a cancer diagnosis and treatment planning. One community caregiver comments—about a patient with breast cancer and schizophrenia: “A good bit of time and coordination was required to get her in the hospital, and for diagnosis and treatment to happen. There was a lot of emotional investment and ethical considerations because of the nature of her psychiatric illness, and issues about choice, and preference, and rights in a variety of ways.” Lack of expertise in caring for these patients was also noted among caregivers; “it has been overwhelming and frustrating at times, hard to determine how her mental illness is affecting her health, and how much of her symptoms were enhanced by her mental illness”.

Despite the challenges, however, caregivers also reported a strong feeling of appreciation toward the patient-centered collaborative care model and an increased sense of closeness with the patient. A spouse of a patient with GI cancer and bipolar disorder remarked, “I felt that someone on the team really understood the way his mind was working and how the cancer affected him emotionally and mentally, where I think that was missing, not with his primary care, who knew him, but with his oncology team, that perspective”. Lastly, caregivers emphasized the importance of tending to their own needs as well as the importance of advocacy to decrease mental health stigma.

Throughout Amy’s time in clinical research, she has come across one theme over and over again: that the social work perspective is indispensable to clinical research. But what, exactly, is the social work perspective? Turns out, it is a mix of everything. It is building strong interpersonal relationships with patients, colleagues, caregivers, and family members. It is applying therapeutic frameworks to support different groups of patients. It is connecting to the communities that patients are a part of and understanding the needs of those communities. It is advocating for underrepresented patient groups. Oftentimes, research spurs advocacy by revealing inequities or disparities in a situation, but at the same time, research can also discriminate by excluding certain patient populations from trials. Social workers—who are trained to ask “Who’s not here? Who’s missing? Who’s not getting their needs met?”—play a vital role in promoting diversity in research and ensuring that research opportunities are reaching all communities.

To principal investigators who are designing a study and thinking about funding, Amy asks that they consider how social workers can be included in the research team. To social workers who want to get involved in research, Amy encourages them to find a seat at the table, speak up for themselves, make connections, and learn what is available at their institutions. Chances are, there may be principal investigators who are already looking to incorporate a social work perspective into their research. It is also invaluable for those new to research to find mentors who can help guide them through the investigative process. Amy credits much of her research success to the excellent mentors she has worked with through the years, including Dr. Kelly Irwin, Dr. Kerri Murphy, Dr. Shirtley Otis-Greene, Dr. Chiara Acquati, and others.

As the new Research Director of AOSW, Amy also recommends that social workers attend the AOSW Annual Conference in May 2024, where there will be numerous opportunities to learn about ongoing research projects and network with peers. In addition to AOSW, there are other organizations, such as the American Psychosocial Oncology Society and the Society for Social Work and Research, that also highlight social work research in healthcare. Ultimately, there are many resources available for social workers who are interested in research, whether it’s to provide guidance on how to conduct research or showcase different ideas and topics.

Most importantly, Amy encourages social workers to be curious about research and think about what is missing from or could be optimized in their work environment. From there, they can consider colleagues who are interested in similar topics—through their workplace, social work school, or professional organizations—to collaborate on research ideas. Amy acknowledges that there are considerable barriers to social workers participating in research, most notably time and funding. Because social workers typically do not have protected time for research, it can be challenging to find time outside of clinical responsibilities to work on other projects. Moreover, funding for professional education can sometimes be difficult to obtain depending on the institution. It is important for social workers to continue to advocate for their representation in clinical research; only with persistent advocacy will the current status quo change. The social work perspective is a critical component of clinical research, and more social work representation is needed to ensure that research reaches all patients equitably and feasibly.

Feature on the Society for Social Work and Research

The Society for Social Work and Research is a non-profit, professional organization that was founded in 1994 for the purpose of advancing social work research in a diverse, just, and equitable manner. Currently, the society consists of more then 1,800 members from across the US and throughout 15 countries. Members primarily include faculty from schools of social work, research staff, and graduate students, representing more than 200 universities and institutions. The society’s mission is to “encourage the implementation and dissemination of social work research, foster inter-professional support, provide learning opportunities surrounding social work-relevant research, promote evidence-based practices and policies, support research funding and training programs, provide recognition of significant contributions to social work-relevant research, and seek active partnerships with other social work and research-related organizations.”

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To promote high quality research, SSWR publishes the peer-reviewed Journal of the Society for Social Work and Research once a quarter, which features research that addresses social inequities and injustices and actively contributes to meaningful social change. Examples of impactful papers include “An Antiracist Research Framework: Principles, Challenges, and Recommendations for Dismantling Racism Through Research”, “Social Work Researchers: From Scientific Technicians to Changemakers”, “Just Research: Advancing Antiracist and Antioppressive Social Work Research.”

SSWR also holds an annual conference in January, the most recent of which took place form January 10 – 14, 2024 in Washington, DC. This year, the theme for the 28th annual conference was “Recentering & Democratizing Knowledge: The Next 30 Years of Social Work Science”. The program included over 500 symposia, workshop, roundtable, poster and paper presentations and featured Dr. Courtney Cogburn of Columbia University as the keynote speaker for the distinguished Aaron Rosen Lecture. Her presentation, titled “We Are More Than Now + This: The Critical Role of Imagination for Liberation, Health and Aliveness”, discussed the idea of using virtual reality to understand racial experiences and oppression.

In addition to the annual Aaron Rosen Lecture, SSWR features several other awards throughout the year to recognize research excellence that “directly and indirectly informs anti-oppressive, anti-racist, and socially just practices and policies”. These awards include the “Distinguished Career Achievement Award”, “Book Award for Best Scholarly Book Published”, “Excellence in Research Award”, “Social Policy Researcher Awards”, “Deborah K. Padgett Early Career Achievement Award”, “Outstanding Social Work Doctoral Dissertation Award”, and the “Doctoral Fellows Award”. Each year, a small group of SSWR members who have ardently served to advance the society’s mission are also honored as Fellows of the society. Fellows are selected based on their leadership, scholarship, service, presentation, recognition, and mentoring characteristics.

A significant part of SSWR is mentorship and support for its graduate student members. SSWR has a separate website, run by the Doctoral Student Committee, that is dedicated to providing resources and networking opportunities for graduate students. On this platform, graduate candidates can reference the Research Starter Kit, which walks them through various aspects of research including methodology, data sets, and funding. There are also helpful guides about self-care and post-graduate job hunting.

SSWR serves as a comprehensive research community for social work investigators, providing a wealth of networking and professional development opportunities. Social workers who are interested in joining SSWR can apply here.