Before clinical trials can become patient-centric, they need patients

I was recently diagnosed with an early stage of prostate cancer. As a former health professional, I automatically started researching the treatment options for prostate cancer, after hearing that my Protein Specific Antigen level was elevated. Though I have been writing articles on patient-centricity in clinical trials, as a ‘patient’ and after getting a cancer diagnosis, you tend to be torn between two worlds. On one hand, you have the ‘health professional,’ and on the other hand the ‘patient,’ who relies on the ‘health professional’ to give support through what can be very uncertain times.

At one point after opting for brachytherapy¹, I started wondering if a clinical trial would also be an option. A date was set for my treatment. I started wondering if I should mention clinical trials to my urologist. Would I be taking unnecessary risks if I decided to consider other options, such as ‘new’ treatments? Who should I go to for help with the questions I had concerning clinical trials and my recent prostate cancer diagnosis?

Second Cancer Diagnosis

A bit more than five years ago, I was diagnosed and treated for colon cancer. I remember asking myself if clinical trials were an option. I kept my thoughts then also to myself and never discussed them with my oncologist or any other health professional. I just assumed that if there was a clinical trial in which I could partake, someone would have told  me. The conclusion I came up with then, was that clinical trials were probably for cancer patients who had little chance of survival.

If I came to such a conclusion, there is a huge chance that other cancer patients come to similar conclusions. I called a dear friend who had recently been treated for colon cancer, and unfortunately had to undergo a second treatment due to metastasis. I asked him if clinical trials were something he thought about. His response, though surprising, also confirmed what I thought. I was not the only patient thinking that clinical trials became an option after it’s concluded that you have little to no chance of survival.

He mentioned that he assumed that clinical trials would be discussed when all other treatments failed. Is my previous assumption correct? Do clinical trials become an option only when all other therapies fail or when other therapies have been depleted? Some of the other questions I was confronted with were: “Who do I call and where do I go to get answers?” “Is searching the internet the ideal way of being well-informed or do I call my oncologist, my case manager or my General Practitioner (GP)?”

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Informing the Patient

If my assumption is incorrect, when is the best time to talk to patients about clinical trials? I actually wonder how I would have felt if my urologist talked about clinical trials after giving me my diagnosis. The fact that I assumed clinical trials were somewhat of a last resort, I most likely would have spent hours awake wondering if my oncologist had been honest concerning my results. Should this prevent patients like me of being informed early about the options of clinical trials? I am convinced that there must be a better way of patients being well-informed of current options or possible options if their treatment is not effective. Would it offer more peace of mind to patients when they’re informed in a timely manner about clinical trial opportunities?

However, there are no guarantees clinical trials would still be available if and when treatment has not been effective. There are so many assumptions to be made about when patients should be informed or if all cancer patients should become aware of clinical trials. I truly believe that only patients can decide if and when they want to be informed about opportunities to partake in a study. The oncologist, the case-manager, the oncology nurse, and even the GP should be there to offer support, but also to initiate the conversation about clinical trials. Just as the patient is most likely not interested in knowing every detail about the study, there is most likely little expectation that the professionals have all the answers at hand.

Navigating the Clinical Trials Highway

Patients must be able to navigate the clinical trials highway. I compare it with driving a car. You get your driving permit, though most of us don’t have a car to drive. We understand the rules and regulations that come with driving a motorized vehicle. When we do get a car, we feel comfortable, secure and trust we can make the right decisions in cases of emergency. The fact of the matter remains that clinical trials need patients before they can become patient-centric. Part of making clinical trials more patient-centric is giving them the information they require during all phases of the trial.

The Challenge

It is a challenge to make the clinical trials highway easier to navigate. It requires input from all stakeholders. They each play an important role; including the patient.

The patient can bring knowledge to the table, which will help pave the highway in such a way that patients have a better understanding of accessing clinical trials, who they should reach out to, and when. This will ultimately improve patient recruitment and retention.


Further Reading

¹ Brachtherapy: Permanent seed brachytherapy, also known as low dose-rate brachytherapy, is a type of radiotherapy where tiny radioactive seeds are put into your prostate. Prostate Cancer UK