How to talk to your patients about clinical trials
One role of health care providers is to provide accurate and balanced information for their patients. The focus of discussions between health care providers and patients should be to raise awareness of clinical trials and discuss the risks and benefits of participation, rather than to specifically encourage participation in a trial.
This website — www.australianclinicaltrials.gov.au — provides support material and information on next steps for patients who are interested in participating in clinical trials.
When talking to your patients about clinical trials, you may want to consider answers to common questions that your patients may ask.
General principles for talking to your patients
Principle 1 — Good communication between health care consumers and health care professionals has many benefits.
There is evidence that good communication helps to build trusting relationships between consumers and professionals, leads to greater satisfaction for both of these groups, helps people to take more responsibility for their own health and reduces medical errors and mishaps.
Principle 2 — Health care consumers vary in how much participation in decision making they desire.
Some consumers prefer to make their own decisions about their health care; others prefer to leave the responsibility to a professional. A person’s preferences for involvement in decision making may vary depending on how serious the medical situation is.
Principle 3 — Good communication depends on recognising and meeting the needs of health care consumers.
Factors such as age, gender, health status, education and cultural background can affect communication between consumers and professionals. Recognising the impact of such factors helps to improve communication.
Principle 4 — Perceptions of risks and benefits are complex and priorities may differ between health care consumers and health care professionals.
Perceptions of risks and benefits are shaped by influences such as personal experiences, emotions and education, and thus differ from one person to another. Communicating these perceptions can help consumers and professionals to understand the other’s perspectives and arrive at decisions that meet the needs of the individual consumer.
Principle 5 — Information on risks and benefits needs to be comprehensive and accessible.
Communicating risk in a way that is objective, useful and unbiased means taking into account factors such as emotions, language, images and perceptions, relevance and amount of information, uncertainty and the effects of ‘framing’ information (for example, by portraying it in a positive or negative way).
Principles for talking about clinical trials with your patients
Patients who have been diagnosed with a particular disease or condition may be interested in clinical trials either to better understand and manage their condition or to play a part in improving health care.
You can initiate a discussion about clinical trials to raise awareness and open the possibility of participation or you can answer questions if the patient is already interested.
When speaking with potential participants, you can:
- communicate respect and the importance of the meeting by acknowledging the trauma associated with the diagnosis (if appropriate) and by displaying empathy in response to emotional reactions
- simplify information by avoiding medical jargon and a laundry list of medications and side effects
- summarise information often and repeat important points
- provide a pen and paper for the patient to take notes and write down questions
- invite patients to make comments or ask questions at any time
- encourage patients to share their thoughts and feelings
- tell patients that all questions are good questions
- stress the importance of information-seeking and elicit questions in an open-ended manner: (e.g. ‘What questions do you have?’)
- check that any questions were answered to your patient’s satisfaction
- talk about the role of clinical trials in health care and how treatments for many diseases have improved over time due to clinical research and the participation of patients in clinical trials
- avoid pushing the recommendation of a specific clinical trial, but, if asked, respond appropriately.
For health care providers
Why and how to talk to your patients.
Find a clinical trial website
Search for clinical trial registries, organisations, research networks, coordinating hubs and support groups by specific disease or condition.
Consumer guide to clinical trials
The Consumers Health Forum have developed a factsheet about clinical trials.
Questions to ask
Need help with questions to ask if you're thinking about being part of a clinical trial?
Download the Questions to Ask Fact Sheet (PDF, 253KB) and take it with you.