Aim
Scientific studies often struggle to recruit participants, particularly a diverse enough slate of people to ensure that the study is relevant for a broad swath of the population. Yet many of the processes to contact participants were complex and outdated. SOM Tech sought to help the Participant Recruitment Program (PRP) update the system in a simpler, more efficient manner.
Partners
Molly Belinski, MPA, senior program manager, UCSF Clinical and Translational Science Institute.
Background
The Participant Recruitment Program (PRP)at UCSF’s Clinical and Translational Science Institute (CTSI) offers researchers infrastructure to identify and contact patients from UCSF Health who might participate in their studies.
As the system had been operating, a researcher would give the PRP the criteria of who would be included and who would be excluded from the study. A PRP programmer would write a query and generate an Excel spreadsheet, and PRP would then send paper letters to all of the candidates. If someone was interested, they would contact the study team.
In recent years, PRP advanced technologically and gained the ability to send messages to patients using the MyChart patient portal. That enabled PRP to send up to 250 messages per day to patients on the list, which helped boost participation in studies. (When patients are seen at UCSF, they are enrolled in MyChart, and “opted in” to be contacted by researchers conducting studies. Patients who choose to “opt out” won’t get contacted by PRP.)
Because the system deals with sensitive patient data, many stakeholders at UCSF examined the program to make sure it stayed in compliance with all laws and rules.
PRP also remained attuned to the potential for “inappropriate contact.” Belinski identified three potentially problematic examples:
- Over-contact. “We don’t want three different studies to contact you in one week,” Belinski said. While PRP had a way to control that in its system, some researchers might use programmers outside of PRP, and generate a list outside of the patient portal.
- Patients who opted out. While PRP won’t contact these patients, others who are not using PRP’s service may not know about the opt-out.
- Contacting patients posthumously. Often the death status on a patient’s record is out of date, Belinski said. If the patient died outside of the UCSF Health system, UCSF may not know. UCSF did not want to upset families by sending recruitments to these patients.
Approach
“We wanted to come up with a system that would bring everybody at UCSF into the fold, using lots of carrots rather than sticks,” Belinski said.
As Belinski investigated potential solutions, people told her those issues could be easily managed in customer-relationship management software, or CRM. UCSF uses Salesforce CRM software, and SOM Tech operates Salesforce for UCSF—leading Belinski to SOM Tech’s door.
SOM Tech proved a perfect partner, Belinski said. It understood the recruitment problem and CTSI’s role in solving it, and it wanted to help.
At the back end of MyChart is software from a company named Epic. “Anytime we build something that interacts with Epic, there’s a lot of work, a lot of bureaucracy, and a lot of rules on who can do what,” said Tom Manley, the SOM Tech project manager who worked with PRP. Because of strict rules about patient privacy, use of those records is highly regulated and restricted, which often limits what doctors and technologists can do.
SOM Tech was able to build an integration between Salesforce and Epic to make it easier to sort lists of patients.
They called the concept EHRMa (pronounced “Ur-ma”), which stands for Electronic Health Records Recruitment Manager.
Because Epic was notoriously difficult to work with, the major inducement to researchers to use EHRMa was just how simple SOM Tech made it.
Solution
So far, researchers have said they really like EHRMa, and PRP continues to enhance the system.
“We have greater visibility into metrics,” Belinski said. “Study teams can now see how many messages were sent out, how many patients clicked for more information, how many clicked ‘no thank you.’ You can see it all on the Salesforce dashboard.”
One simple fix that SOM Tech built in: It cross-references UCSF patients with the California death index. “It’s not perfect, but it’s better,” Belinski said.
Belinski said one particularly wonderful aspect of the system is how it makes it easier for study teams to contact patients who do not have patient portal accounts. “We know that the populations that use MyChart and those who don’t use MyChart are very different.”
“We really had a lot of success getting studies to send these letters,” she said. “On the platform, with a few clicks, you can see how many patients don’t have MyChart accounts and easily facilitate sending letters to them.
Many of those not on the portal are people with limited knowledge of English, as well as those who are under-represented racial and ethnic minorities. “We do not want to perpetuate any research disparities,” Belinski said.
“For our program in general, everything we do, we try to include diversity and equity as a consideration,” Belinski said. “For this project in particular, the increasing access and ease of contacting patients who don’t have the patient portal was very important to us.”
For instance, if the research team conducting the study wants to reach patients who speak a language other than English, it can have its letters translated and put those into the system. Then when people who speak those languages are identified as potential participants, the system will send them a letter in the appropriate language.
PRP has a couple of enhancements in the pipeline. Belinski and her team plan to continue to work with SOM Tech and evolve and update the system.
“We want to add a dashboard related to equity for the study team to view, so they can easily see the race, ethnicity, language, sex, age, of their overall cohort versus those responding, so they can have better visibility into who they’re recruiting,” Belinski said.
In addition, recognizing that the most effective communication reaches people where they want to be reached, PRP is considering adding text messaging.
Belinski said working with SOM Tech was a “great experience.”
“Their way of working is very collaborative,” she said. “It requires the participation of the customer. They give input in real time, and you can see the changes as we go. It was a very efficient and good way to work.”
In this project, Belinski said, “I learned so much more about the back end of the program, including all of the technical issues, and it gave me a stronger knowledge of our system. I now have a better ability to think about enhancements going forward.”
Written by Dan Fost for SOM Tech (2022)