Regional Projects

Empowering Patients to Optimize Breast Cancer Management (EPOBCM)

The long, winding and challenging road from attempting to accelerate the prolonged first pre-diagnostic sojourn in the breast cancer voyage to finally land on a mission to empower patients to optimize the management of the entire breast cancer voyage.

What Is EPOBCM?

EMPOWERING PATIENTS TO OPTIMIZE BREAST CANCER MANAGEMENT (EPOBCM) is a clinical pilot trial that would provide patients with both the opportunity and tools to optimize their medical care. The first step is to recognize the crucial importance of their input and then how best to harvest it.

History of the VMOF EPOBCM Clinical Trial

The Ville Marie Oncology Foundation (VMOF), founded in 1996 in Montreal, Canada, has a mission to promote early detection, best therapy, and overall breast cancer management — primarily in Quebec. It also has an International Mission.

In 2018, while the VMOF was involved with additional local and international breast cancer projects, there were already several press reports outlining unacceptable delays and the subsequent stress placed on patients with a Significant Breast Abnormality (SBA) who were waiting for a Definitive Diagnosis — to determine whether their SBA was breast cancer or a benign condition.

The VMOF Board then requested its medical counselors to submit potential projects that could help mitigate these delays. The eventual chosen project, entitled Accelerated Access to a Definitive Diagnosis (AADD), focused on the Pre-Diagnosis Sojourn (PDS), the first — and most stressful — of the three Sojourns that make up the Breast Cancer Voyage. The other two are identified as the Therapeutic Sojourn and the Survivorship Sojourn.

The original AADD project proposed to help public health patients waiting over 10 weeks to find out if their Significant Breast Abnormality (SBA) was, in fact, breast cancer or a benign condition — by directing them to less busy clinics.

Despite initial enthusiasm, all clinics were already fully overbooked, and any intervention on behalf of a specific patient could be interpreted as “jumping the queue” which was unethical in Quebec.

More importantly, the numerous early editions of the AADD were simple projects and not formal clinical trials, thus lacking the credibility to collaborate with other professionals and entities interested in optimizing breast cancer management.

After the two-year pandemic, the AADD project underwent a long revisional process, shifting its focus to detailed data collection — now from consenting patients — to identify and propose solutions to the obstacles causing delays during the Pre-Diagnostic Sojourn (PDS).

With a detailed protocol, the AADD project could now be elevated to a formal clinical trial, to be reviewed by a formal ethics committee. Based on the likelihood that patients who consented to provide data during their PDS, and were diagnosed with breast cancer, would also be willing to share data through the following Therapeutic and Survivorship Sojourns, the trial scope was expanded.

The AADD project was thus modified to collect data across the entire Breast Cancer Voyage and renamed Optimizing Breast Cancer Management (OBCM). Finally, to emphasize the crucial role and the need of empowering patients to provide the needed data, the project became – Empowering Patients to Optimize Breast Cancer Management (EPOBCM).

Why Empowering Patients Matters

There have been long-standing repetitive articles regarding delays in all portions of the Breast Cancer Voyage, including a most recent series of reports in October 2024.

In 2022, the Fondation du cancer du sein du Québec (FCSQ) / Quebec Breast Cancer Foundation responsibly exposed some limited data indicating that, once again, Quebec patients who had been informed of a Significant Breast Anomaly (SBA)—such as an abnormal mammogram, a breast lump, etc.—and who required urgent care, sometimes had to wait between 10 and 16 weeks, under excessive stress, to complete the required additional investigations.

This Pre-Diagnostic Sojourn (PDS) often includes more sophisticated imaging, nearly always including a biopsy report, to finally produce the Definitive Diagnosis needed to inform those patients—some of whom were waiting months—that their SBA was either breast cancer or only a simple benign condition. The FCSQ, citing academic sources, stated that such delays could result in decreased survivorship.

When asked, the Health Care Administrators could not explain the delays, as they had to rely on often minimal and fragmented local breast cancer management data, while the patients had to navigate one exam at Clinic A and the next at Clinic B. The Health Care Administrators did not have access to the most credible, reliable, pertinent, and essential data regarding breast cancer management—data that originates exclusively from those consenting patients who have actually traveled through at least the first sojourn (the PDS), and often the full three breast cancer sojourns.

As they travel, these patients are best able to identify stress and anxiety levels, obstacles, delays, cancellations, disorder, and irritants.

This data is essential for the Health Care Administrators to optimize breast cancer management.

While expert health providers—such as physicians, nurses, and para-medical experts—will continue to administer appropriate diagnosis, treatment, and advice, empowered patients will identify, assess, and suggest solutions via detailed, ongoing, time-sensitive data to optimize actual management.

This new concept is beyond just recognizing patients—it requires empowering them by providing a podium and an opportunity to gain a seat at the official breast cancer table. Patients are now better informed and should be seen as equal participants in the treatment team.

Nearly all major advances in breast cancer management have been achieved through formal clinical trials.

Formal clinical trials are needed to establish new treatments and improvements in clinical practice, as well as provide credibility to obtain collaborators and partnerhships. One such collaborator,  MedHelper Inc.  has expressed its interest in supporting the EPOBCM formal clinical trial.  

Funding and possible publication are also facilitated through formal clinical trials.

Administering a formal clinical trial requires appropriate expertise and the ability to follow a series of rules and regulations, including submitting the detailed trial protocol to a formal Ethics Committee to ensure the trial is protecting consenting patients, the information they provide, and many other features.

Empowered and consenting patients are capable of providing the most time-sensitive, reliable, pertinent, authentic, and credible data needed to uncover the detailed anatomy of current breast cancer management — the basis needed for subsequent optimization.

The main challenge for any clinical trial is patient accrual, as there are specific rules and obligations for both the trial team and potential patients. Recruiting patients is easier if they are motivated to participate in the EPOBCM for the following reasons:

  1. Current patients are significantly better informed and are demanding optimal care, and should be interested in participating in optimizing care for themselves and those who follow.
  2. Recognizing that the consenting patients are an essential component to optimize breast cancer care.
  3. Providing consenting patients with an opportunity, a podium, and a voice to be finally heard and recognized as the most capable to identify and mitigate frustrating obstacles, irritants, and delays encountered through their respective breast cancer voyages — issues that could be resolved for the next waves of patients.
  4. Offering consenting patients a proud opportunity to optimize breast cancer care via a novel clinical trial.
  5. Consenting patients will feel less alone in their Breast Cancer Voyage as they will have access to regular communications with their VMOF EPOBCM sponsor and/or the Montreal EPOBCM office for medical and trial-related information — all via a new specific EPOBCM/MedHelper APP for their cell phones.
  6. Consenting patients’ weekly routine will include two simple 10–30 minute sessions: receiving 10 to 30 simple questions on Mondays, which will be answered by Fridays via the cell phone’s EPOBCM/MedHelper APP.
  7. Consenting patients can be recruited remotely and provide data from wherever they are, at any time, with no obligation to travel — as data is collected via the special online APP.
  8. Consenting patient’s physician will be informed of this observational trial which will not interfere with the physician’s instructions.

Additional Recruiting Measures


The VMOF has been recruiting new VMOF members & EPOBCM recruiters (VMERs) over the last two years who have specified an interest in supporting the EPOBCM. They come from various regions of Quebec and serve as the on-site eyes and ears of the trial. If a VMER hears about a new patient who has been informed of a Significant Breast Abnormality (SBA), such as an abnormal mammography, breast lump, or ultrasound — and is still waiting for a Definitive Diagnosis — the VMER would be best positioned to contact the patient with empathy and invite her personally to join the EPOBCM.

Ideally, doubling the current number of VMERs — and having each recruit a local assistant — would significantly improve recruitment efforts.

A newly diagnosed (within the last 10 weeks) patient also consents to answering a series of questions sent Monday AM and answered by Friday.

This confidential process would occur:

  • Weekly during the Pre-Diagnostic Sojourn
  • Every 2 weeks during the Therapeutic Sojourn
  • Once a month during the Survivorship Sojourn

The General Satisfactory Index results will be requested monthly.

This entire process is carried out via the EPOBCM/MedHelper APP, which offers participating patients 24/7 support if needed. 

The answers to the questions — constituting the data — are sent directly and confidentially online, from anywhere in Quebec, to the patient’s research file for analysis.

Sophie is committed to playing a role as an informal and dedicated ambassador to promote the EPOBCM trial  within her community and at conferences to which she is invited throughout Quebec.

We are delighted to have her support.   

Learn more about Sophie:

 

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