1 | Why are you convening this Lab?​

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The purpose of this advanced prostate cancer 'learning lab' is to assemble a diverse crowd of experts (super patients, researchers, computational biologists, physicians, academics, testing experts, scientists, immunologists, pathologists, etc.) to collaborate on recommending tests, treatment strategies, and best next treatment options for individual advanced prostate cancer patients. We seek to understand the patients’ specific disease drivers and mechanisms of resistance from multiple angles (e.g., multi-omics, spatial analysis of the tumor molecular environment, etc.) and map those insights to good/better/best treatment options.

 

These advanced cancer patients will get current, personalized recommendations that will seek to provide the most durable clinical responses. Also, we recognize that as advanced prostate cancer patients progress through multiple treatments, the biology of the cancer changes. This Lab will consider evolutionary dynamics in the treatment strategy for patients with metastatic castration resistant prostate cancer, which allows treatment understanding of not only the present state of the cancer, but where the cancer is going.

 

This Learning Lab seeks to accelerate advances in the knowledge and practices in advanced prostate cancer management by learning from the experience of other patients – longitudinally for a given patient (interventions and outcomes), across patients, and across cancers. We are using the real world evidence of patient experiences.

Scientific advancement has created advanced tests (such as spatial analyses) to help determine optimal therapies for advanced prostate cancer that can be applied today, but these tests are often designated for Research Use Only (RUO) and not currently being translated to patient care.

 

Prostate cancer is a fertile ground for learning about how to make advanced testing and treatment decisions from real world experience, as it is relatively unique among cancers in that it has a readily available biomarker for monitoring the cancer’s aggressiveness (the PSA test), so that patients can run treatment experiments, learning from each experiment.

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2 | How is this different from what is already happening in healthcare?

 

There is a lot of great science happening in prostate cancer, but it’s in silos. The gulf between what is scientifically possible for a given patient and what the current industrial system is able to deliver has widened in recent years. There are many new tests and drugs that haven’t been incorporated beyond the standard of care.

 

This Lab is a collaboration across industry, academia, and healthcare providers. It spans multiple institutions and provides learning opportunities across institutions. We reach into research labs to pull cutting edge tests and therapies into consideration for individual patients. Providing a patient/small cohort focus can create a way to bring this science together and solve real problems that advanced prostate cancer patients face.

 

A way to illustrate the Prostate Cancer Lab’s effort is to consider one diagnostic test, spatial phenotyping. Given that leading patients and clinicians have insight to the patient’s DNA and RNA, understanding proteomics and single cell dynamics (spatial phenotyping) seems like a logical next step in understanding their cancer. We know that proteins are the functional molecules of all cells and enablers of biological processes. The majority of drug targets are proteins, which makes protein biomarkers especially useful for developing therapies and diagnostic tools. Spatial phenotyping is a new technology that can provide greater depth and precision of understanding. It is generally used today for research only…but spatial phenotyping companies like Akoya Biosciences and NanoString are just getting CLIA certification. So, it’s on the cusp of clinical application, but being on the cusp means that a patient’s medical team may note be aware of it or know what to do with it. Med oncs have educational channels, but they can be slow, incomplete, and lack the context of treating their actual patients. We believe that the patient’s voice matters in accelerating awareness, education, and adoption of these new diagnostic tests for clinical guidance. We also know that several med oncs support this view and want to help in the effort. We are flanking our doctors to support their efforts to help us while we stay the course with the best existing plan.

 

By focusing on the time-sensitive decisions of advanced cancer patients, we hope to accelerate adoption of emerging tests (beyond DNA sequencing) to guide their treatment decisions.

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3 | Who are the advanced prostate cancer leaders and what credibility do they have?

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For this hackathon and learning system, we are building on the Bryce Olson hackathon of a year ago (December 2020 - March 2021). It focused the Bryce Olsen Collaborative on one patient looking for his best next treatment.

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This prostate cancer lab intentionally has a bigger scale (two patients initially with open enrollment) and bigger scope, such as a guide to tests, which will explicitly help other patients. Our intention is to do this in a bigger way, so ideally we will have the ability to continuously add patients to have them benefit from the work that has been done, and to have them benefit others — rolling forward.

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We are drawing on the experience and resources of infrastructure services to gather patient data and extract insights, and we will be including a variety of novel testing and diagnostic companies to more deeply understand the disease of each patient.

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4 | Who are the patients?

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There are as many different cancer patient personas as there are different kinds of prostate cancer. Given a cancer diagnosis, patients can take complete direction from their clinical team, complement and collaborate with them (e.g., working with industry and academia on time-intensive analyses), and everything in between.

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This Lab is not for everyone. This is for advanced prostate cancer patients (many years since diagnosis and having gone through several lines of treatment) who are catalysts, dot-connectors, and attractors, educating themselves to be in the co-pilot’s seat, rather than the passenger’s seat, in their testing and treatment decisions. These are citizen scientists actively managing their disease.

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5 | What problems do these patients share?

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Advanced prostate cancers differ, and patients face complex testing and treatment decisions with many treatment options and little personalized evidence to guide them and their medical teams.

 

There is great promise for precision medicine from new tests, such as RNA sequencing and various -omics, but most patients don’t know about them, and most clinicians either don’t know about them, how to use them, or have the time to pursue them.

 

The healthcare system operational model must evolve to keep pace with these scientific breakthroughs. There is a gap in translational medicine.

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6 | What are the objectives and outputs of this advanced prostate cancer lab?

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• Answers for the patients on their testing and treatment strategy and best next options

• A consumer’s guide to testing, summarizing and rating the value of the tests we recommend

• Guidelines for the advanced cancer patient (building on the NCCN guidelines, but for patients after several years and many rounds of treatment)

• A learning system for future advanced cancer patients, e.g., an open registry of patient records with longitudinal tracking of progress, development of algorithms for treatment decisions, sharing of decisions and experience across patients

• Collaboration across the existing molecular tumor boards at various hospitals and academic research cancer centers to share experience, insights, and outcome

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7 | What does it mean to participate as an advanced prostate cancer patient?

 

All advanced prostate patients being treated in innovative ways should contribute their test/treatment histories and outcomes to our database. At the least, their data will help patients with similar molecular profiles make more informed decisions. And vice versa.
 

We’re continuously learning from every patient. This initiative will enable us to immediately share what we learn with all patients who might benefit – potentially resulting in them changing to a more effective treatment, or having a plan B ready just in case.

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8 | What does it mean to participate and contribute as a bioinformatician, oncologist, researcher, diagnostics expert, scientist, pathologist, or patient advocate?

 

You should expect a culture of learning and transparency: open participation, open data, and open results. You will be invited to join calls, meetings, and an online discussion forum. You may choose to participate when you are interested, and you will receive meeting summaries (recordings and notes) if you are unable to join. If you have analytical tools, you are encouraged to apply them and share your analysis. If you have specialist knowledge, you may participate in smaller discussions or in virtual testing and treatment prioritization panels.
 

8 | Who and why should you participate?

 

Who

• Patients and caregivers who are educated about advanced prostate cancer treatment

• Bioinformaticians, computational biologists

• Prostate cancer researchers, oncologists, clinicians

• Diagnostic testing experts

• Pathologists

• Scientists

• Immunologists

 

Why

• Learn: hear from other brilliant contributors across disciplines and institutions, look holistically at a cancer case (or cohort of cancer cases), offer and get feedback on your ideas, observe live experiments

• Contribute to advancing practices and knowledge

• Connect with interesting peers

• Promote a better, patient-focused way to practice medicine

• Showcase novel approaches (if you’re a vendor), run experiments with your technology

• Co-author articles that come out of the prostate cancer lab findings

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8 | How can I get more information?

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Please contact Brian McCloskey or Brad Power.  You can also visit CancerPatientLab.org