When cancer patients, carers and survivors, as well as people not affected by cancer, take part in research, it helps researchers learn more about cancer and ways to treat and prevent it.

Many people diagnosed with cancer who join a clinical trial or another research study do so because they want to help improve outcomes for others in the future, as well as for themselves. Adults and children can take part in different ways, including:

• consenting to their medical records and personal information being accessed
• doing surveys and interviews
• being involved in a clinical trial
• agreeing to be examined regularly by health professionals
• allowing samples of cells or tissue taken during tests or treatment to be used for research outside of their own medical care.

All research studies, including clinical trials, have guidelines setting out who can take part. These are known as eligibility criteria.

Most cancer research involves current patients, but some studies focus on cancer survivors, carers, family members, people at risk of cancer or people who have not been affected by cancer.

Anyone under the age of 18 needs permission from a parent or guardian before joining a research study.

To make sure results reflect Australia’s diverse population, it is important that research involves people of all ages, genders and sexualities, as well as people from a wide range of social, economic, racial and cultural backgrounds.

Cancer research is carried out in many places, including hospitals, treatment centres, laboratories and universities.

Sometimes you can be involved in cancer research from home. For example, you might have treatment or medicines mailed to you, or you might be asked to fill in a survey or complete a telephone or face-to-face interview. 

In Australia, some people are now taking part in clinical trials that use telehealth (teletrials ).

There are many advantages to being involved in a clinical trial or other research study. Depending on the type of research, the benefits may include:

• knowing you have made a valuable contribution to helping others in the future
• joining programs or having medicines or other treatments that are not readily available outside of the study and may be better than the current standard treatment for that disease
• getting access to expensive drugs that your specialists recommend but that are not currently supported by the Pharmaceutical Benefits Scheme (PBS)
• seeing your treatment team, including specialists, more often
• taking an active role in your health care
• learning new ways to improve your lifestyle
• improving or maintaining your quality of life
• feeling that you have tried all treatment possibilities.

Your doctor and the clinical trials or research nurse will discuss the possible advantages and disadvantages for you before you join a research study.

Taking part in research doesn’t always mean you will be better off than before or compared to other people in a similar situation. Some people may not respond in the way researchers hope and will not benefit from being involved in the research.

In some clinical trials, people are divided into two groups. Only one group receives the experimental treatment, while the other group receives the current standard treatment.

You won’t get to choose which treatment you have, but either way you will be monitored more frequently and closely than usual.

Understandably, people want to know if there are any risks to taking part in research. Researchers must follow strict guidelines to make sure clinical trials and other research studies are as safe as possible for everyone involved. This is called their duty of care.

Before any research involving people can begin, it must be approved by a special group known as a human research ethics committee.

As part of this process, researchers identify risks that might occur, such as possible side effects. They must also explain how they will closely monitor these risks and what will be done if problems occur.

Before you agree to take part in research, you must be told about the risks, how you will be monitored for problems, and what will be done to help you if problems occur.

To reduce the risks, clinical trials are arranged in a series of steps known as phases.

From start to finish, clinical trials and other research studies may take several months or many years, but you may only need to be involved for some of this time.

For example, you might just have a single appointment lasting a couple of hours, or you may go to appointments every few weeks, months or years. You may also have to do surveys at regular times.

The participant information will set out what you would need to do and how long you would be involved.

Studies have what is known as a recruitment phase. This involves finding people to enrol in the study. It usually occurs over a few months or years until the required number of people have agreed to take part.

The study is then closed to new participants. After the treatment stage is over, there may be a follow-up phase. People may be followed up at set intervals for months or years.

This allows researchers to understand the long-term effects of treatments, monitor the general health of the participants, and collect data about long-term survival and quality of life.

Ask your doctor whether being involved in the research will affect any other treatments you’re having or planning to have. These may include:

• standard cancer treatments
• medicines for managing treatment side effects or symptoms of cancer or other conditions
• complementary therapies such as herbal or nutritional supplements, or massage.

Your doctor may suggest stopping or delaying some treatments, or adjusting them in some way (e.g. by changing the dose).

It is important to let the research team know about any other medicines, supplements or complementary therapies you are having, as these may interact with the treatment being tested and cause harmful side effects.

Joining a clinical trial or other research study is free for Australian citizens and residents, and you should not be asked to pay to join.

The cost of trial-related treatment, tests and check-ups will be paid for by the organisation that is funding or conducting the research, sometimes called the sponsor.

You will usually still have to pay for any treatments or tests you would normally pay for as part of your standard care. The participant information will outline any extra costs to you.

People participating in cancer research usually don’t get paid. This is because offering people money to join a clinical trial may put too much pressure on them to agree.

In some circumstances, you may be paid back for certain expenses (e.g. for travel, parking, light refreshments). These are known as out-of-pocket costs. The participant information will outline what expenses will be covered.

You may be interested in joining multiple clinical trials and other research studies. Check with the research team whether you can be part of more than one study at the same time.

If you can, think about whether you’ll be able to commit to all the requirements of the studies. With clinical trials for medicines, you can usually only join one trial at a time.

A  team of people work on research studies , and some of their roles may overlap. If you decide to join a clinical trial , you may have contact with all or some of these people:  

• Investigator – also known as a researcher, an investigator develops and plans research studies, and obtains, analyses and publishes the results.
• Nurse or research assistant – coordinates finding people for the trial (recruitment) by talking to potential participants, making sure they are eligible and explaining the purpose of the trial, and acts as a link between the patient and the researchers or the health care team.
• Study coordinator – ensures the trial meets ethical and legal requirements, and applies for grants and manages budgets.
• Cancer specialist – may be a medical oncologist, surgeon, radiation oncologist or haematologist. A cancer specialist supervises your treatment, follow-up and overall care.
• Other professionals  – including a pharmacist, allied health practitioners and complementary therapists.

In most cases, your cancer specialist will continue to look after your overall cancer care while you are on a clinical trial.

Clinical trials are designed to answer different research questions:

• Treatment trials – test new treatments, new ways of giving existing treatments, or new combinations of treatments. They look at whether the treatment works and if it causes side effects. The treatments that can be tested include: medicines (chemotherapy, immunotherapy, targeted therapy and other drugs); medical devices; radiation therapy; surgical techniques; nutrition advice; physiotherapy; exercise programs; psychological therapies; and complementary therapies. Most cancer clinical trials in Australia are treatment trials. 
• Prevention trials – work out whether medicines and health programs lower the risk of developing diseases such as cancer.
• Screening trials – look at new approaches of detecting diseases before symptoms appear.
• Diagnostic trials – identify more accurate or easier tests for diagnosing a particular disease in people who have signs or symptoms.
• Quality of life trials – test ways to improve the comfort and quality of life of people who have cancer. They are done alongside a treatment trial. 

Behavioural researchers try to understand why people behave in the way that they do. They study the characteristics, lifestyles and social situations of different people to see how these factors may affect the risk of developing or surviving cancer.

They then try to develop ways to prevent or change behaviours that might increase cancer risk or lower survival outcomes.

Behavioural researchers also look at the emotional and social impacts of cancer on the person with cancer, as well as the impact on their family and friends.

If you take part in a behavioural research study, you may be asked to fill in surveys or be interviewed about your lifestyle, including your eating, drinking, smoking and exercise habits.

You may also be able to take part in a program aimed at changing these behaviours. For example, you might be offered free counselling, an exercise class or a session on healthy eating.

The aim of the programs may be to reduce cancer risk or to improve how you cope with the impacts of cancer.

One area of behavioural research is called psychosocial research. This looks at how cancer affects people emotionally, psychologically and socially. In cancer care, this is sometimes called psycho-oncology.

Researchers try to understand how patients and carers cope emotionally at different stages of a disease. They develop and test ways to improve people’s ability to deal with the impacts of cancer.

Translational research forms a link between laboratory and clinical research, or between clinical research and standard treatments. It aims to get new treatments or medical approaches into practice quickly.

It is sometimes called “bench to bedside” research because laboratory research results are directly used to create new therapies and tests.

The findings of behavioural and psychosocial research are also translated into information resources for people affected by cancer.

There can also be “bedside to bench” research – for example, hospitals, treatment centres and health professionals may collect information about how well a treatment works to help laboratory researchers work out what to study next.