A recent study lead by Jeffrey R. Botkin, MD, MPH, sought to understand patients perceptions of the use of information from EHR and clinical tissues for medical research. The press release about the results of the study, “Innovative Approach, Reveals New Public Attitudes About Access to Medical Information and Bio Tissue for Research“, reveal some interesting insights about public perception.
Here’s how the study was conducted:
To educate the study’s 131 participants, they were shown a 12-minute video on electronic medical records initiative and access to residual biospecimens research. Then they engaged in lengthy focus group discussions revealing their opinions about how the research was handled. Questions included: Did they feel it was ethical? Did they feel like there should be informed consent? How long should people have to give their consent, after all they could be in the hospital? What are your thoughts about conducting this type of study without written consent from people whose records are reviewed?
Although privacy and security is certainly a hot topic with the use of EHR, one outcome of the study may be a bit of a surprise to some in this context of medical research. Co-investigator Erin Rothwell, PhD, states, “The most important finding from this study was that people, when educated about the safeguards, were fine with their information or tissue being used for research without their signed consent. They were okay with it as long as they had the option to opt out if they wanted.” She added, “Our current approach to informed consent is flawed due to lengthy consent forms and increased complexity.”
With regard to the research Dr. Botkin explained, “The general support we heard for research was consistent with other surveys from around the country. What was surprising is the public is generally not aware of the safeguards in place to assure that research is done in an ethically appropriate fashion. It was heartening to see that people are reassured when they learn about how safeguards work.”
From patient engagement to patient education the study revealed that “when the general public is educated about the intricacies involved in collecting and using this information in population-based research — particularly the safeguards and confidentiality measures in place to maintain anonymity — that they support it.” Dr. Botkin states, “Figuring out how to inform patients about these issues in a routine fashion is the next big challenge.”
This study is a great example of just how quickly the conversation of the real meaningful use of EHR can escalate in the context of population health. There are also some interesting takeaways for the increasingly complicated interactions that patients must be a part of in their clinic experience. More than just the accessibility of their data, but what the implications of structure and sharing of that data really means to them during the interaction of the patient experience and beyond.
Robert Green is the author of Community Healthcare: Finding a Common Ground with New Expectations in Healthcare. Through his physician client relationships, Bob has gained substantial insight regarding the daily challenges that medical professionals and their staffs face, such as regulatory issues, financial management, and clinical collaboration through the use of health IT. His process of making both interpersonal and purposeful connections within the organization results in improved employee performance and confidence and enhanced client experience. Source
