Barriers to accessing Clinical Trials

One of the biggest challenges is simply knowing about clinical trials. Many women say that they were never told about trials, or if they were, it wasn’t clear or easy to understand their options.

The main barriers women face include:

• Where you live (demographics)

• Practical issues

• Eligibility

• Finding information

• Understanding information

• Diagnosis and treatment

• Limited trial options in certain types of ovarian cancer

• Communication with healthcare providers

• Support and resources

Where you live (demographics)

Where you live and your background may impact the type of information you can access. We know that that some people find it harder to get information about trials. They may be from:

• varied cultural and social backgrounds

• non-English-speaking communities

• older age groups

• rural and remote areas.

There’s a whole lot of women who are from disadvantaged backgrounds or non-English speaking backgrounds. We need to think about how people from diverse communities access their information.

Practical issues

Joining and participating in a trial can be made more difficult due to:

• travel time and costs

• not having access to a specialist

• limited or unreliable internet

• not being able to travel to where trials are held.

If I had to go to Canberra or Sydney at my own cost ... [what] would it mean for me to travel there ... and stay in motels and things? That would make it a little bit harder for people who do have to travel.

Eligibility

Most clinical trials have eligibility criteria you will need to meet before joining the trial.

I just wasn’t offered anything because I didn’t qualify or there wasn’t a need.

Some people can feel discouraged, disadvantaged and/or left out if they don’t meet the eligibility criteria. It can seem difficult to understand – so always ask your specialist doctor to explain why you are not eligible.

There was a trial and I'm not eligible for that. So, I questioned my oncologist, and he said that because I'm already on [another drug], that eliminates me from that trial.

Finding information

It can be hard to find and access relevant clinical trial information. This can be frustrating when you’re trying to learn about treatment options.

I’ve constantly asked about clinical trials, and I’ve just found that it's been very difficult to get the relevant information or get the right detail.

Understanding information

Medical terms (jargon) and the language used in the information given to patients about clinical trials and eligibility criteria can be difficult to understand. Women say this causes confusion about their options.

A lot of the time I don’t understand the lingo [jargon].

Some expressed a need for a central, online resource explaining clinical trials in simple, understandable terms.

Understanding the trials, it’s bigger than Ben Hur.

Initially I was like “oh this is some complete cowboy [untested] kind of trial” … but after looking into it, I realised it’s actually standard practice in other countries ... [it’s important to] educate people that it’s not quite cowboy.

Diagnosis and treatment

Symptoms from the cancer (such as pain and fatigue), and treatment side effects (such as feeling extremely tired or mentally foggy) can make it hard for some women to actively search for trial information.

Barriers for me would be … just the energy to invest in looking for information while I’m undergoing active treatment.

Limited trial options for certain cancer types

Some women with rarer forms of ovarian cancer may not qualify for most trials.

[I have] a rarer cancer ... so it sort of eliminates me with some of the trials.

Communication with healthcare providers

Sometimes it can seem like healthcare providers (doctors and nurses) may be too busy or not aware of relevant trials. Or information about trials isn’t provided at the right time.

They’re pretty under the pump at our hospital … They probably don’t have time to look up all that information [about clinical trials] all the time. They’re probably bombarded.

Doctors and nurses can play a key role in helping women understand clinical trials as well as connecting them with the most suitable clinical trial. It is okay to ask your treatment team more than once about trials. Your circumstances and ability to take in new information can change during the course of your diagnosis, treatment and care. Don’t be afraid to ask questions, even if your doctors and nurses seem busy – they still want to be there for you and help answer all your concerns.

I really just want one person that I can go to, and they can just tell me everything I need to know or answer all the questions I have.

Better communication from doctors and nurses is needed, as is more involvement in discussions about possible treatment options, including clinical trials.

I wasn’t told much about clinical trials, and when I asked, it felt like a bit of an afterthought. It wasn’t clear to me what my options were.

There is a real need for improvements in how clinical trials are communicated to women with ovarian cancer.

I just want someone to tell me about my options and help me figure out what’s best for me.

People have a strong desire for trustworthy, clear and easy-to-find information, and for proactive discussions from their medical team explaining why a clinical trial might be an option.

I had to ask my doctor about clinical trials. They didn’t bring it up themselves.

How should I prepare for discussions with my Doctor? - The American Cancer Society

Support and resources

Women want more guidance in navigating the clinical trials process, from finding trials to understanding their eligibility. They want ‘a one-stop shop’, preferably online, to find out:

• what trials are available

• how to join a trial

• who to contact to discuss any barriers they are facing and about their general concerns.