Enhancing Patient Access to Research
Research, along with patient care and education, is one of the three pillars supporting our mission to improve the health of the communities we serve. Moreover, as an organization, it is imperative that research is conducted to the highest ethical standards and that all patients have access to research opportunities. Presently, most patients learn about research only from their personal health care provider. If not informed by their health care provider, they must navigate our website and determine their suitability for participation using their own judgment and knowledge of research opportunities. This scenario disproportionately skews research participation toward the most informed individuals and/or those under the care of physicians who actively seek research opportunities for their patients.
Recently, a group of stakeholders from Research, Compliance, Health Analytics, Legal, and Marketing collaborated to develop specific research language for our general consent-to-treat form. This language informs patients that they may be contacted for voluntary participation in research studies conducted by Carilion Clinic health care providers. Patients will have the option to “opt out” of these requests if they wish. Opting out will have no effect on their current treatment or their relationship with their physicians. Additionally, their physicians may continue to discuss research opportunities through the standard patient-physician relationship.
To implement this new paradigm, the team developed consent language, a process for documenting opt-out preferences in EPIC, and a call line/email inbox to address patient questions. Both English and Spanish versions of the consent form were created. The team is also developing a communication strategy for the broader community, utilizing a variety of platforms.
In summary, stakeholders from various functional areas collaborated to thoughtfully draft a plan ensuring that research opportunities are accessible to all patients, regardless of barriers such as physical location, socioeconomic status, or their provider’s awareness of available studies. The team also worked through the necessary approval processes to bring this initiative to fruition. While the foundational aspects of the project have been accomplished, the team is committed to introducing this paradigm strategically and diligently to ensure patients, the community, and health care providers are informed and engaged.
A social media campaign will include the message below, to be posted on the Carilion Clinic Facebook page, as well as a YouTube video and FAQ.
Your health matters, and so does your voice in research. Our Research Outreach team contacts people who’ve received care from us about research studies they may be eligible to take part in. This gives everyone in our community a chance to be represented in research. If you don’t want to be contacted by our Research Outreach team, you can opt out by calling 540-224-6744 or emailing optoutresearch@carilionclinic.org. Opting out does not prevent your healthcare team from talking with you about research opportunities that may be relevant to your care or health condition.