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Ways to Engage Patients for Clinical Trials

Posted by | 1:10pm on Thursday, April 19, 2012

only 2% of the US population and 4% of physicians ever get involved with clinical research 

Use mobile devices to keep patients motivated. Leverage electronic health records to find eligible participants. Create a robust website dedicated to educate participants. These were some of the innovative tactics discussed at the 3rd Patient Engagement Summit in Philadelphia on March 20-21, 2012.

Joe Kim, Director of Clinical Operations at Shire Pharmaceuticals, was the conference chairperson, and he did a great job of keeping the audience engaged and on track. He is clearly one of the leaders in innovative ways to engage patients and shared his expertise judiciously throughout the two-day event.

The biggest challenge identified by all speakers was finding patients willing to participate in clinical trials.

Staggering Statistics
“Less than 5% of Americans know where to find information about clinical trials relevant to them,” shared Joris van Dam, Translational Sciences Strategic Projects Leader at Novartis Institutes for BioMedical Research. Furthermore, only 2% of the US population and 4% of physicians ever get involved with clinical research. “We have an obligation to inform patients about the opportunities they have to join clinical research studies,” van Dam said.

One solution that Novartis has been piloting: engage patients and physicians in clinical trials at the point of care using electronic health records (EHRs). With most EHRs, conditions, results of lab tests and prescriptions for medications are given an identifying code. In partnership with EHR management companies, Novartis has developed a process to notify physicians about ongoing clinical trials using these codes. At the point of care, as the physician enters data in the EHR, the system notifies him or her immediately if there is a clinical trial related to that disease. This process could help ensure that the right study is identified for the right patient, with minimal disruption to routine clinical practice.

Is Enrolling for a Rare Disease Trials Any Different?
Many speakers focused on rare diseases. One example came from a smaller company that was starting to recruit for a clinical trial whose enrollment group included pediatric segments. Since there is already an existing therapy, enrollment proved to be challenging. One of the biggest barriers was parental fear. If a child is doing well on therapy, parents don’t want to cause any unnecessary pain (like from numerous shots) or have their child be a “guinea pig.”

The director of clinical operations identified some unmet needs that could make a parent more willing to enroll their child:

  1. Education. If the parent thought their child would learn more about the disease and how to live with it, they might consider enrollment.
  2. Access to a doctor. Many times patients only see a nurse and complain that they never get to see their doctor. If the protocol specified that the patient had to see the doctor for every infusion, this was seen as a benefit to participating in the study.

How can you discover these unmet needs and what your community would see as a benefit to getting involved in clinical research? Ask.

We at Siren have found that most patients and caregivers in the rare disease space want to have a relationship and dialogue with pharmaceutical companies. Collaboration is essential.

Looking at successful strategies that other sponsors and sites have already used can help companies overcome obstacles to patient recruitment.

Enrollment Complete. Now What?
Most speakers thought that one area of clinical research that could be improved was the communication to patients. For many studies, there can be a three-month gap between patient visits to a site. Long-outcome trials can be hard on patients. A few tactics were identified to foster better communication.

First, leverage mobile devices. Kim kicked off the panel discussion with the observation that texting is not US-centric—it is far more common in Estonia. Panelists included Jordan Lateiner, Assistant Director, Clinical Development at Forest Laboratories; Judith Teall, Director of Patient Recruitment, Exco InTouch; and Donna Jarlenski, Clinical Operations Head, Momenta. Jarlenski shared that there is no specific demographic or patient profile ideal for texting. Engagement depends on the message. “You need to make texts meaningful and well received,” she said. According to Teall, 65+ is the fastest growing demographic for texting—older people want to stay in touch with children and grandchildren.

Key Takeaways
Communication must come through the site, but you can’t put the responsibility solely on the site coordinator. Develop a focus group to determine tolerance of this type of communication; write all messages ahead of time and have them approved. Messages should be a mix of study-related information (remind the patients what their responsibilities are) and personal notes (send them a text wishing them happy birthday).

Second, dedicate a website to patients enrolled in clinical trials. This gives them access to information before, during and after a study. One example is patients@heart developed by Abbott Laboratories. The site has a password-protected area for patients, but what is really impressive is the educational content on clinical trials. It is presented in a very user-friendly way. As I was writing this blog, Sandra Gazel, Associate Director of Clinical Operations at Abbott Canada, shared with me that the site was being updated to provide more interactivity. I’m looking forward to seeing the 2.0 version.

Third, clinical trial patients can’t be thanked enough. There was a group consensus that one of the bigger pharmaceutical companies should take out a full-page ad in the New York Times that simply thanked all the patients for their involvement. There should also be a strategy to engage with participants beyond the conclusion of the trial. For example, make plans to  give them updates about the study results or extension studies.

What do you think of these suggestions?

About Ciaran Bellwoar

Ciaran brings more than 10 years of interactive experience to her role as Director of Business Development. Before Siren, Ciaran was the Director of Client Relations at I-SITE, a web design and eMarketing firm where she created long-term relationships with mid-sized pharmaceutical companies such as Noven Pharmaceuticals and Purdue Pharma.

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