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Another Side of Patient Engagement

The patient engagement craze in clinical research today is largely driven by recent technological innovations. An app allows patients to track their symptoms on their own time, providing clinical data in a passive and convenient fashion. Social media is explored as a new avenue through which to recruit patients for an upcoming trial. These developments have shown great promise in transforming the clinical research landscape for the better.

But patient engagement can transcend intriguing new devices and software. For many researchers, it has become a matter of policy. Across the country, researchers have begun to seek patient input into many aspects of the design of a clinical trial. This approach to patient engagement is less concerned with finding innovative ways to collect patient data remotely or passively, but rather with acknowledging the important role patients play in clinical research, and incorporating patients’ stated priorities into what actually takes place during a clinical trial.

What’s important to patients

It’s a strategy born from the desire to respect the sacrifice that patients make – time, energy, and more – when they enroll in a trial. This means making sure that trial designs are as well-suited as possible to patient needs, and understanding that, sometimes, no one knows how a treatment affects patients better than the patients themselves. As a result, researchers have started to give patients a say in what questions will be asked in questionnaires gaging the impact of a drug1. Patients can also contribute to the scheduling of site visits so that they can minimize the amount of work they miss. This inclusion of patient input has been implemented at Mt. Sinai in New York, the University of Wisconsin, and beyond, and is even supported by the federal government1.

The benefits of this approach to patient engagement are numerous. In addition to making patients feel more comfortable and valued, researchers can gain a clearer and more complete understanding of patients’ conditions. It can also help in other areas of clinical research, such as patient engagement: if potential recruits are made to understand that their needs and priorities will be closely catered to throughout the course of a clinical trial, they may be more likely to enroll2. There are, however, disagreements and potential limitations. Some doctors worry that clinical trial design requires more scientific and medical expertise than patients are likely to possess. And in a 2014 pediatric clinical trial, there was a dispute between parents and researchers over whether the children in the trial should be given questionnaires assessing the impact of the treatment1.

In some trials, the incorporation of patient input has been accompanied by efforts to equip patients with the knowledge necessary to participate in study design, such as creating medical dictionaries1. Similar efforts could further refine the role of patients in modern clinical trials. The end result could be an approach to patient engagement that views patients less as customers to be convenienced, but as true partners in the clinical research process.

1 Marcus, Amy Dockser; Design Power: Patients Play Researchers in Drug Trials; The Wall Street Journal; 29 September 2014
2 Parnell, Tiffany; Expanding the Role of Patients in Setting Research Priorities; MD News; 1 July 2016

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