This summer, the Partners HealthCare Biobank introduced a new website with the potential to significantly reduce the cost of research: electronic consent. The website will enable BWH and Massachusetts General Hospital (MGH) patients who wish to participate in the Partners Biobank to provide electronic consent from their computer or mobile device, enabling outreach to hundreds of thousands of patients.
The Partners Biobank is a research program designed to help researchers understand how people’s health is affected by their genes, lifestyle and environment. The biobank is also aimed at accelerating medical research and cutting the cost of research across the Partners system by centralizing the collection of blood samples for research. To date, more than 16,000 patients have provided consent to participate in the biobank through traditional recruitment by research assistants. Ninety percent of them have also provided blood samples. These samples are linked to clinical data from the electronic medical record and to data on family history, lifestyle and environment (e.g. sun exposure or sleep habits) that are collected in an online survey. Samples and data are available to all Partners investigators with appropriate approval from the Institutional Review Board.
“We’ve been tasked with recruiting 75,000 patients. The only cost-effective way we can achieve this objective is to take the informed consent process online,” said Scott T. Weiss, MD, BWH Department of Medicine, director of Partners Personalized Medicine, and principal investigator of the Partners Biobank. “We are maintaining our research staff because it’s important that we continue to meet with patients, but there are many patients whose questions may be addressed on a website.”
The Pilot Project
As part of a pilot project over the course of the summer, patients were invited to participate in the Partners Biobank via email. Over 6,000 patients with upcoming appointments in several clinics received an email from Patient Gateway, the patient portal at BWH and MGH. If interested, patients could log into Patient Gateway (to authenticate their identity) and, from there, go to the Partners Biobank website. The website has video and educational content, and enables patients to review the biobank’s consent form and provide their electronic signature.
Also part of the pilot project, staff sent surveys to patients and physicians, and conducted interviews with patients. The purpose of the surveys and interviews was to obtain feedback, both qualitative and quantitative, on the electronic consent process.
“We want to learn from physicians and patients, and to iterate on our website and resources based on their feedback,” said MGH’s Susan Slaugenhaupt, PhD, co-investigator, Partners Biobank. “This is a dynamic process. We are trying out something that’s never been done before, so we are moving forward mindfully, and iterating on our approach based on the feedback we receive.”
A majority of physicians who responded to the survey thought that the electronic consent process didn’t impact clinical flow. Nearly one-third of the physicians said they were not familiar with the Partners Biobank and twenty percent indicated that they did not know where to get additional information. Partners Biobank Co-investigator Elizabeth Karlson, MD, BWH Department of Medicine, has been working with the team to educate physicians and clinical staff about the project.
“We plan to expand our education program to reach out to everyone across Partners HealthCare as we prepare to significantly increase the number of people who are invited to participate via email,” said Karlson.
Now that the pilot project is complete, the biobank will roll out its email campaign to BWH and MGH patients who have Patient Gateway accounts. The objective is to send email to more than 400,000 patients over the next 12 months. Jordan Smoller, MD, co-investigator, Partners Biobank, has been working with biobank staff to anticipate patient and physician response to this new mode of research recruitment.
“Patients may have questions about the biobank, and they may address these questions to their physicians,” said Smoller. “We are mindful not to add impact to the clinical process.”
The biobank has made several resources available to physicians such as the website, which includes an extensive FAQ, as well as six investigators and support staff. There is also a course, “A Practical Guide to Biobanking for Biomarker and Personalized Medicine Research,” that will be delivered on October 1, and an online course on the Partners Biobank for CME which will be launched in winter on the continuing education website.
The biobank team continues to refine its processes and systems to enable enrolling large numbers of patients into its research program. The next step for electronic consent is to integrate with MyChart, the new patient portal that will be rolled out as part of the EPIC implementation.
Article courtesy of Partners HealthCare Biobank.