In the world of clinical trials, research and study site staff are so overburdened with daily activities that they are usually operating with blinders on - completing the tasks they have at hand to move the trial forward. While this is something they must do to ensure they are successful in their careers, it often causes them to look beyond the most important part of the trial - the patient.
Patients enrolled in trials are fighting for their health and, oftentimes, have resorted to enrolling in a clinical trial or study as a last-ditch effort to extend their lives. They are scared. They are anxious. And above all, they have no idea what to expect. For these reasons alone, the research world must improve the way they communicate with patients.
But how does one go about this? Here are some helpful tips and questions you can answer for patients to enhance communication with patients, and ultimately increase levels of patient engagement and compliance throughout their trial experience.
Enhancing Communication During Clinical Trial Consideration
One of the most common reasons patients choose to either not enroll in a trial, or drop out of a trial once they’ve begun their trial experience, is due to not knowing all the risks or benefits that come with it. There are no doubt many concerns patients are worried about before enrolling, but according to a study conducted by Memorial Sloan Kettering Cancer Center there are four top reasons why patients don’t enroll:
- Worries over the potential side effects and safety of the trial
- Concerns about the potential insurance and out of pocket costs related to the trial
- The inconvenience of the study site location
- Concerns about receiving a placebo in the trial
All of these concerns are completely valid. No one wants to experience the uncertainty over what might happen to either their body, or their pocket, and potentially come out of the trial without any positive result - all the while feeling like a guinea pig in a lab.
The best way to reduce these feelings? Through proper communication and education on what is to come if they are to enroll in the trial. Two tips on how you can improve this process are by first, working with the patient's primary care physician to evaluate all options when it comes to clinical trials, and which best fits their goals for care. The second is to thoroughly explain informed consent forms, and all steps of the trial procedure. This way, patients will have a familiar person supporting them during their choice and are completely prepared for what is to come during the trial.
Enhancing Communication During and After the Clinical Trial
During the Trial
Once enrolled, patients are still facing an uphill battle when it comes to a sometimes rare disease or medical complication. This does not help with the anxiety and fear that comes along with being a trial participant. During this time it is extremely important that you keep an open line of communication with patients so they feel supported and that they are not alone on this journey.
Patients may ask you questions such as:
- “What do is do incase of an emergency?”
- “Who is there for me to contact in case I need support?
- “What will the experience look and feel like?”
- “How is the trial progressing?”
- “How is my experience similar or dissimilar to other enrolled in the trial?”
You must help answer any of the patient's questions with as much information and detail as possible. One great tip is to regularly update the patient on the status of the trial without them prompting you. This creates a feeling of trust between the provider and the patient and makes them feel included in the proceedings.
And while you always want to be able to answer all the questions, sometimes you don’t have the answers. This is where connecting a patient with another patient enrolled in the trial becomes important, as they can share advice and help support each other during the trial. You can also introduce patient advocacy groups whose main goal is to ensure the patient has a voice and their needs are being met.
Upon Trial Completion
Even after the trial is over, this does not mean that the patient is automatically back to normal. Patients report feeling numb and lifeless after going through such a life-changing experience - and that after the trial is where their needs for support go unmet the most. Additionally, patients are looking to find out the results of the trial as soon as they can.
It is the job of the research and study staff to not cut all ties of communication with patients upon completion of the trial, but regularly engage with patients to check-in on how they are feeling, share the results of the trial, and what they should expect/evaluate if they are to look for other treatment options.
Additionally, inviting patients to share their trial experience is the best way to evaluate both levels of patient satisfaction, and how well you’ve performed your duties for patient engagement. Taking in feedback surveys from patients will allow you to measure what your level of communication you had with patients during the trial, and what you can do to improve upon your processes through strategic, data-driven decision making.
While many of the strategies listed above can be difficult to achieve, it doesn't have to be this way. eCare Vault is a patient-centric HIPAA compliant collaboration and workflow optimization platform, supporting the patient and the study team along the entire clinical trial journey from pre-screening to completion of the study, and beyond - and we’re here to help. If you’d like to find out more, check out this brief demo of our patient-centric portal.