Accelerating innovation in the US
A review of the funding and knowledge gaps in prostate cancer research across the US: 2024
How we produced this report
This report focuses on the current state of prostate cancer research, in terms of funding, science, and other barriers to high-quality research in this field in the US.
AREAS REVIEWED
Literature review
Clinical trials
Researcher survey and focus group
Patient focus groups
LITERATURE REVIEW
A literature review was conducted in the Autumn of 2023, using PubMed, Nature Journals, and Google Scholar. We started broad, with recent reviews in high-quality journals such as Nature, New England Journal of Medicine, and Cancer, and then prioritized research articles based on the information in the abstract, quality of the publication, citations in other key papers we had read, and publication within the last 10 years. The end result was a broad overview of the field; spanning basic research into the biology of the disease, drugs and treatments that are in development, and evaluation of the current standard of care and existing knowledge gaps.
CLINICAL TRIALS
Information on current US-based clinical trials into prostate cancer was compiled from Clinicaltrials.gov, a registry of clinical trials run by the United States National Library of Medicine at the National Institutes of Health, and analysis completed in-house in February 2024.
RESEARCHER SURVEY AND FOCUS GROUP
A survey on US funding gaps was prepared by PCR staff, ‘US Funding Gap Survey – Prostate Cancer Research’, and publicised via the PCR website (pcrus.org) and disseminated to university research and innovation offices and social media platforms such as X, Facebook and LinkedIn. It was live from 25 July 2023 for 6 months and we received 45 responses from researchers at different career stages. An in-person focus group with 6 scientists was conducted in New York City in October 2023.
PATIENT FOCUS GROUPS
We conducted two virtual patient focus groups in May 2024, with a total of 13 prostate cancer patients from a variety of states who had received a variety of different treatments and had prostate cancer at various stages.
Who were our respondents
What we learned from patients
A patient focus is in our DNA. People who have been affected by prostate cancer are experts by experience, and we are committed to striving to make space for patients’ own voices to be heard and amplified, and to involve them as active participants in the strategic decisions we make.
AREAS OF CONCERN
Diagnosis
Insurance and social service support
Variation in treatment choice and experience
The struggle to find reliable information
Impact factors
DIAGNOSIS
Diagnosis is inconsistent
Experiences with diagnosis ranged widely amongst the patients we spoke to. However, delayed diagnosis was a common theme, with one individual initially misdiagnosed and one person stating frustration at the urologist’s dismissal of his concerns despite a family history of prostate cancer. However, other participants reported positive experiences, with good support and information as they were diagnosed.
The Critical Time between diagnosis and treatment
All patients who had a time delay between their diagnosis and starting treatment reported it as an anxious time. It was generally felt that peer support and counselling could help.
What patients tell us
I felt as fortunate as somebody getting diagnosed with late-stage cancer could feel, because I lived in an area where there was a center of excellence.
INSURANCE AND SOCIAL SERVICE SUPPORT
Patients face barriers to timely cancer diagnosis due to lack of access to medical care while experiences with insurance were mixed. Insurance was often used to get a second opinion, with some patients receiving second opinions quickly within their insurance group while others had to wait longer. One participant even reported being misinformed by his insurance provider about what he was entitled to.
Social workers associated with oncologists’ offices were described as an important resource, providing vital information about financial support.
VARIATION IN TREATMENT CHOICE AND EXPERIENCE
Patients reported varying levels of information provided about treatment choices, including too much, too little, or about the right level of information, and being given varying degrees of choice in the treatment they received. They spoke positively of patient education days and of the benefits of a multidisciplinary team approach to their care.
However, it was felt that there should be more transparency on medical professionals’ success rates, and delays in care were reported due to a lack of communication and coordination among healthcare providers. Certain individuals expressed a need for more tailored information for gay men with prostate cancer, and for medical professionals to be better equipped to accommodate the mobility needs and safety concerns of wheelchair users.
THE STRUGGLE to FIND RELIABLE INFORMATION
Every participant expressed disappointment at the level of information provided through official channels, especially information around treatment side effects. While many patients were able to access further information online, especially through peer support forums, there was a stated desire for “a centralized clearinghouse for prostate cancer information and support” so that they and their loved ones did not have to search so hard for reliable information, especially considering the prevalence of misinformation.
What patients tell us
What has gone well are the actual treatments that I’ve gotten. The treatment itself has gone very, very well but in general, the most important thing, I think, and the one that continues to bother me is the lack of education. Not just information but education, like we talk about age-appropriate education for children. I definitely would have appreciated treatment-appropriate information at each stage of my treatment.
IMPACT FACTORS
What are the things that have impacted you the most during your prostate cancer journey?
- Uncertainty about what’s coming next
- Becoming empowered as a patient
- The expense of ADT drugs is life-changing in itself
- Lack of tailored support, for example, for gay men, single men
Treatment side effects include:
- “Chemo brain” – memory issues, and stumbling over words while talking
- Trying to live with erectile dysfunction
- Body changes due to lack of testosterone, such as increased frailty and weight gain
- Lack of energy
Clinical trials in the US
A healthy clinical trials ecosystem reflects a healthy culture of innovation which will see more treatment options become available to all patients in the future. For people currently being treated for prostate cancer, clinical trials can be their first chance to access breakthrough medicines.
Key insight
Prostate cancer accounts for a tiny fraction of the trials.
UNMINED POTENTIAL
- Majority of trials being based in urban settings, and in hospital settings, which are not accessible to many people
- People of colour are usually underrepresented in clinical trials
- Our newly formed Creating Connections initiative, a major multi-year initiative to build trust in healthcare, is to increase diversity in clinical trial participation
- We will continue to encourage researchers to consider accessibility when they start to consider taking their innovations to clinical trials
Clinical trials statistics
Key insight
Most trials focus on treatment, and on advanced prostate cancer.
Key insight
Barriers to access: most trials are in hospital settings and in urban places.
Clinical research across the US
As identified on the Carnegie Classification of universities awarding research/scholarship doctoral degrees
Maps of university clinical research
Map of R1 universities* with research identified as focused on prostate cancer
R1 research identified
R1 research stated as focused on prostate cancer
Map of R2 universities with research identified as focused on prostate cancer
R2 research identified
R2 research stated as focused on prostate cancer
What we learned from the scientists’ focus group
Who were our focus group
- 6 scientists took part in a focus group on Wednesday 18 October 2023
- They were from institutions in Massachusetts, New Jersey, Texas and Atlanta
- They had become prostate cancer researchers for a variety of reasons and from a variety of backgrounds, including through having family members affected by the disease, from working on a variety of different cancers, through volunteering in a lab following retirement from another career, and from a background in public health and data analysis
- They were funded through the US government, DOD (Department of Defence), NIHMD (National Institute on Minority Health and Health Disparities), fellowships for postdocs, and NIH (National Institutes of Health), which is broadly in agreement with our survey
- Competition for funding was a real concern, with one researcher saying she typically always applies to five grants to get just one
- It was broadly felt that the researcher’s institution affected their chance of success, especially if there was a better-known institution in close geographical proximity to their institution
Key findings from the focus group
RESEARCH FUNDING
- Competition for funding was a real concern: “Apply to five to get one”
- Concerns that funders are increasingly risk-averse, requiring more and more preliminary data, which is harder for researchers (especially ECRs) to secure
- “Hot topics tend to come and go” and there’s a sense that what’s in or out of fashion with funders affects a scientist’s ability to get funding
- Concern over the extent to which institutions affect chances of success, especially if you’re in close geographical proximity to a better-known one
- Concerns around how funders make their decisions and if funders are affected by biases
- Challenging to secure:
- Salary support for research assistants on project grants
- Salary support for postdocs on project grants
- Research costs if you are funded by career development awards
- Funding for ECRs
What scientists tell us
At that point, it feels like you are competing with your boss for the same amount of money. You have to step out of the shadow of your boss and break out and be your own thing.
BARRIERS TO ACADEMIC RESEARCH
- Lack of funding was a key barrier to remaining in academia
- Universities themselves can be gatekeepers, putting more senior people forward and approving their submissions at the expense of ECRs
- There was a consensus that it is incredibly difficult for researchers to access patients and hear their perspectives
- Researchers expressed frustration that US norms on indirect costs can mean up to half a grant goes to the university on running costs and not to the research
- It’s challenging to access some key areas of expertise, which is creating blockages:
- Pathologists
- Biochemists
- Computational Biologists
What scientists tell us
It’s difficult to read notes from clinical settings as it feels like they speak a different language.
HIGHLIGHTS OF AN ACADEMIC RESEARCH CAREER
Despite the challenges, participants were generally positive about their careers. Autonomy and flexibility over both ideas and time were mentioned by most participants as highlights of their jobs, and people also praised the ability to provide mentorship and to have a positive impact on the world.
What scientists tell us
You get to give back to people just as you were once mentored.
You get to dream and do what you’re interested in.
You get to have your own ideas – you don’t get to do this much in industry.
Understanding who is funding research
U.S. Federal government funding (e.g. National Institutes of Health (NIH), National Cancer Institute (NCI), US Department of Health and Human Services - HHS, Agency for Healthcare Research and Quality (AHRQ), National Science Foundation (NSF), Patient-centred Outcomes Research Institute (PCORI)).
Society organization (American Cancer Society, Leukaemia & Lymphoma Society, American Association for Cancer Research).
Foundation grants (Susan G. Komen for the Cure, Hope Funds for Cancer Research, etc.).
Understanding who and what is being funded
Scientists list a number of stages in their career where they struggle to get funding
- Mid-career because you are no longer eligible for most grants which are for young investigators but are not yet as senior to compete with full professors.
- Transitioning from early career to mid-career as a researcher is a major barrier. You’re no longer eligible for early career awards and are competing against more senior scientists. This can cause investigators to lose momentum or drop out, especially women.
- New PhDs and junior postdocs are now very attracted to better pay in biotech/pharma and we are losing them from academic research once they get their degree or after maybe only 1 year of postdoctoral training. This is very worrying for the future of biomedical research because a) we are losing future academic researchers, and b) the PIs are losing the long-term workers in the lab who make the process of research more efficient and help to train new students/postdocs.
- When not in a supportive environment – regardless of career stage.
- During early years of parenthood.
Key insight
Respondents listed being at early career stage, bias towards certain institutions and against individuals who are non-White and non-native speakers, lack of overall research funding and the challenges of balancing a career in science with having a family as major barriers to getting research funding.
Understanding the barriers to getting funding for research
Scientists tell us of the impact of time spent applying for funding
Most of my time is spent on writing grants to secure funding rather than doing research. In addition, the regulatory burden has become like an autoimmune disease and takes too much of my time.
Scientists tell us of the single major factor which they feel is a barrier to successfully competing for research funding
The current funding climate in the US can be described as toxic. The shortage of support has corrupted the system beyond belief. It is sad for me to watch and reflect upon it as it has been difficult now for 20 years. We have outstanding concepts to translate to help patients with prostate cancer, but they unfortunately just sit there.
Understanding the barriers to remaining in cancer research
Scientists tell us about concerns of race and gender discrimination
- As a first-generation immigrant from the Middle East, I’ve faced numerous injustices in my career, especially after September 11. Being categorized as White with White privilege is unfair. We need data disaggregation to address injustices in the US within academic centers and funding opportunities.
- Challenging with motherhood and parental leave to catch up and get the same opportunities as other colleagues.
- My greatest barriers occurred when I was a student. I was a Black single mother living below Federal poverty guidelines. I was working full time and attending school full time. The ability to participate in paid research internships during the summer months exposed me to basic science. By providing paid internship opportunities to marginalized populations, they are able to envision themselves in this space.
- Women scientists in general have received less funding compared to men per recent findings.
- I wish that there was more support for those of us who are of African-American ethnicity, low socio-economic background, and first-generation college students. I wish there were some consequences for those who abuse and mistreat postdocs and graduate students.
Key insight
Respondents also disclosed concerns around racial discrimination and barriers to progression for women affecting their careers.
Understanding what support scientists want from us
If other – please state it here
Provide supporting resources, especially to the family members who lost their loved ones due to cancer. This includes grief skills in a group setting to help their family members move on in their lives or develop an awareness about prostate cancer prevention etc.
Working with scientists to advocate for the research.
Both grant funding and fostering network collaboration.
Ensure that grant panels are open to data. It is not all about testosterone!
