A Chilling Patient Story and The Sequoia Project’s Consumer Engagement Group’s Efforts to Improve Patient Access to Data

There has been tremendous progress in healthcare IT interoperability, but this video is a stark reminder of how much more we need to do to better support patients, caregivers, and their providers. Health information exchange is about more than just the technical connections, it also requires policy and culture support for sharing clinical data when and where it is needed.

Anna McCollister, who is on the board of directors at The Sequoia Project and who leads and cochairs their consumer engagement strategy workgroup, shares her personal experiences in this video. Her story inspires empathy for patients dealing with difficult illnesses, and particularly the outrageous difficulties in getting their data to the doctors who need it to make informed care decisions.

McCollister sets the stage with a chilling description of information blocking she faced in her own treatment, when she needed medical images for an urgent specialist visit. She requested the data, but was only offered a data sharing procedure from the referring practice that essentially came out of the nineteenth century and would have prevented her from accessing the data in time for her specialist appointment.

Thanks to her long-earned expertise as a patient advocate and health IT nerd, McCollister is an extremely informed patient. However, even she needed to be reminded of the “magic words” to resolve her most recent information blocking problem. She points out that the provider denying her the information didn’t even know the concept of “information blocking,” which has been a focus of HHS for years.

Being a patient, especially one with complex health issues, can be overwhelming enough. Access to critical health data shouldn’t be an additional stress.

Any of us could have a similar need when a health condition “comes out of nowhere” and disrupts our lives and families. Should it be the patient’s or family caregiver’s responsibility to make sure that the diagnostic, treatment, laboratory, and other information gets to the doctor? Instead, the data should just be there.

Still, McCollister says that companies “want to do the right thing” and that her workgroup will provide the tools and processes to help empower patients with their own data. All patients need to know the “magic words” to ensure access to their own data today, as we work toward a reality where there are no necessary magic words.

“Are you adding to the patient’s burden or decreasing it?” she asks. Regulations only get you so far. All providers must gain more empathy for their patients and make care team access to clinical data easier.

Watch the video for McCollister’s fascinating story and the philosophy guiding the consumer engagement strategy workgroup at The Sequoia Project.

Check out this graphic we mention in the video which illustrates all the various devices, labs, drugs, doctors, and lifestyle efforts that patients like Anna have to manage and coordinate to stay as healthy as possible.

Learn more about the Sequoia Project: https://sequoiaproject.org/

Listen and subscribe to the Healthcare IT Today Interviews Podcast to hear all the latest insights from experts in healthcare IT.

And for an exclusive look at our top stories, subscribe to our newsletter and YouTube.

Tell us what you think. Contact us here or on Twitter at @hcitoday. And if you’re interested in advertising with us, check out our various advertising packages and request our Media Kit.

There has been tremendous progress in healthcare IT interoperability, but this video is a stark reminder of how much more we need to do to better support patients, caregivers, and their providers. Health information exchange is about more than just the technical connections, it also requires policy and culture support for sharing clinical data when and where it is needed.

Anna McCollister, who is on the board of directors at The Sequoia Project and who leads and cochairs their consumer engagement strategy workgroup, shares her personal experiences in this video. Her story inspires empathy for patients dealing with difficult illnesses, and particularly the outrageous difficulties in getting their data to the doctors who need it to make informed care decisions.

McCollister sets the stage with a chilling description of information blocking she faced in her own treatment, when she needed medical images for an urgent specialist visit. She requested the data, but was only offered a data sharing procedure from the referring practice that essentially came out of the nineteenth century and would have prevented her from accessing the data in time for her specialist appointment.

Thanks to her long-earned expertise as a patient advocate and health IT nerd, McCollister is an extremely informed patient. However, even she needed to be reminded of the “magic words” to resolve her most recent information blocking problem. She points out that the provider denying her the information didn’t even know the concept of “information blocking,” which has been a focus of HHS for years.

Being a patient, especially one with complex health issues, can be overwhelming enough. Access to critical health data shouldn’t be an additional stress.

Any of us could have a similar need when a health condition “comes out of nowhere” and disrupts our lives and families. Should it be the patient’s or family caregiver’s responsibility to make sure that the diagnostic, treatment, laboratory, and other information gets to the doctor? Instead, the data should just be there.

Still, McCollister says that companies “want to do the right thing” and that her workgroup will provide the tools and processes to help empower patients with their own data. All patients need to know the “magic words” to ensure access to their own data today, as we work toward a reality where there are no necessary magic words.

“Are you adding to the patient’s burden or decreasing it?” she asks. Regulations only get you so far. All providers must gain more empathy for their patients and make care team access to clinical data easier.

Watch the video for McCollister’s fascinating story and the philosophy guiding the consumer engagement strategy workgroup at The Sequoia Project.

Check out this graphic we mention in the video which illustrates all the various devices, labs, drugs, doctors, and lifestyle efforts that patients like Anna have to manage and coordinate to stay as healthy as possible.

Learn more about the Sequoia Project: https://sequoiaproject.org/

Listen and subscribe to the Healthcare IT Today Interviews Podcast to hear all the latest insights from experts in healthcare IT.

And for an exclusive look at our top stories, subscribe to our newsletter and YouTube.

Tell us what you think. Contact us here or on Twitter at @hcitoday. And if you’re interested in advertising with us, check out our various advertising packages and request our Media Kit.