7 Questions: Joan Justice on supporting cancer patients on their treatment journeys

The executive director of the Patient Empowerment Network discusses how providing information and links to others with the same disease can result in better outcomes and greater participation in clinical trials.

Why was the Patient Empowerment Network (PEN) created and what are your main goals for the next few years?

Patient Empowerment Network was created to help bring cancer patients resources and support so that they can become advocates for themselves and for others in their community. We help patients to help other patients with stories and support, through videos and articles about clinical trial enrolment, living and coping with their disease and generally continuing their cancer journey.

Our goal is for every patient worldwide to get the best support they can, and for them to be confident enough to stand up for themselves and get the best care that they deserve.

According to a recent study, 72 per cent of patients diagnosed with cancer defer their treatment decisions to their doctor. Why do you think this number is so high?

Worldwide, the physician is still considered to be the best decision maker when it comes to healthcare. We do not argue that the physician should not be a major voice, but we want to include the patient's voice as well. Patients should share decisions about their own treatment. They should be confident enough to talk about treatment options with their entire medical team. They should educate themselves about their illness, ask questions and be awarded an equal voice in their treatment discussions.

What are the benefits of being an empowered patient and can empowerment potentially lead to better treatment outcomes? If so, how and why?

Numerous studies and articles have shown that patients who learn more about their illness, and practice shared decision making with their medical team, have better outcomes. They become more confident that they are getting the best care, and they continue to self-advocate and remain involved in their care. They learn how to live with their condition and reach out to others for support and, in turn, support others on their journey.

Patients who are interested in their care will try harder to get the best care, to do the very best for themselves and live the best life they can with their illness. They will be more compliant with their treatment plan and more vigilant about their progress.

What types of support, beyond treatment, do patients benefit from the most?

Patients gain a tremendous amount of help and comfort from meeting and talking with other patients like them, patients that have walked in their footsteps and are following the same road. We see from the virtual meet-ups we organise that patients are glad to speak to other patients and discuss topics related to their illness. They gain hope and support from these discussions and want to continue these relationships.

Patients that attend our town meetings experience the same feeling. Some of these people have never met someone with the same disease before. During the breakout sessions at the live events, patients get a chance to meet others like them, and they truly enjoy that. We've received many testimonials from patients tremendously encouraged after meeting others that are experiencing the same thoughts, concerns and feelings.

What barriers stand in the way of patients enrolling in clinical trials? What is PEN doing to overcome them?

The biggest obstacles to clinical trial enrolment are lack of awareness on the part of the patient and medical team, misconceptions about the clinical trial process and cost and inconvenience for the patient.

Many, many patients are simply unaware of clinical trials that could benefit them. Their doctors don't have the time to search for trials and help them through what can be a complex and lengthy enrolment process. Unless the doctors are affiliated with a major institution, they may be unaware of what trials are available.

Patient advocacy organisations can really help with clinical trial awareness. Videos and testimonials from patients can help other patients become aware of the importance of considering a clinical trial. And patients can approach their medical team and ask about the availability of a trial and request help.

Patients have misconceptions about clinical trials, thinking, for example, that they may receive a placebo instead of the new cancer drug or that they will be 'guinea pigs' and subject to some new experimental treatment that may be harmful.

Placebos are almost never given in cancer trials. The experimental drug is usually compared to the 'standard of care', which is the drug that would probably be given to the patient if he or she were not enrolled in the trial.

And yes, the drug is experimental, but it has already been tested for years and those receiving it are extremely closely monitored – much more than they would be under other circumstances.

Cost and inconvenience are big obstacles to many patients. In some trials, medication costs, additional screening costs, doctor visits and travel expenses are not covered and the patients must pay for these themselves. Patients should always ask before enrolling in the trial what costs are covered and what costs are not. Sometimes the patient's insurance will cover the costs, but the patient must ask prior to enrolling in the trial.

Patient advocacy organisations can help patients overcome many of these obstacles. At PEN we are gathering information, conducting interviews and writing blog posts about clinical trial awareness and navigation. We have researched trial finders, financial resources and websites with good information on clinical trials.

We also host videos about clinical trials from our town meetings. These include doctors, nurses, patient advocates and patients speaking out about their experience with trials, the obstacles and the progress being made.

Would patients benefit from greater collaboration between patient organisations? If so, how is PEN collaborating with other groups?

I believe that collaboration among patient advocacy groups is synergistic. We can all learn from each other and we all have readers who can benefit from other perspectives. If we all join forces and pool our information, patients will benefit from a larger amount of knowledge and information. We ask to collaborate with many groups. Many have responded and become great partners.

For example, we hosted a town meeting for lung cancer patients with LUNGevity and one for melanoma patients with the Melanoma Research Alliance.

Many pharma companies talk about themselves as being 'patient centric'. What progress do you see the industry making in terms of demonstrating their patient-centricity? And what more needs to be done?

Many pharma companies support patient advocacy programmes, but they need to do more. The grant system is still very restrictive. Many pharma companies will not allow the grants people to even talk to anyone from a patient advocacy organisation. They are still afraid about compliance and don't want to hear anything about an activity other than what is submitted through the grants portal. This is discouraging. How can they understand exactly what it is that we do?

Some pharma companies try and develop their own patient websites with blogs and videos. But surveys have shown that most patients do not trust these sites. They understand that they are corporate sites and will naturally be biased. They want a site that will give them unbiased information about all treatment options.

Pharma should be more interested in what patient advocacy organisations do. They should attend patient education events and talk to the patients first hand. They should invite patients to their company to talk to their executives about the patient journey. They should listen as patients explain how they felt when they were first diagnosed, how they shared their diagnosis with loved ones and how they are coping with their illness. They need to understand how patients feel about clinical trials, how they feel about the costs of treatment and how they discuss options with their medical team. And then they need to ask these patients what pharma can do to help.

About the author:

Joan Justice is Executive Director at the Patient Empowerment Network. Joan has a background in healthcare and business. She received her nursing degree from L'Ecole d'Infirmiers in Nice, France and her MBA from SUNY Buffalo.

Joan has held upper level managerial positions in domestic and international marketing for several large medical device manufacturers. Most recently, she managed HealthWorks Collective, the healthcare website in the Social Media Today network.

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