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Idea CARE to SHARE App and NLP to Enhance Patient Engagement and the Cancer Registry

By Valerie Watzlaf | 17 Dec, 2014

Idea submitted by: Valerie Watzlaf, PhD

Healthcare facilities are required by law to report cancer-related data items to state and central cancer registries. Since the cancer data is not required to be reported concurrently, it can be outdated, incomplete and underutilized. Also, risk factors of a specific cancer that may not be found in the medical record are not always included in the cancer registry.

Patients and family are needed to provide this data directly. Cancer registrars, the employees who perform abstracting of medical records and other data sources, for cancer registries, are at a major shortage. Faced with these issues, Care Communications, Inc. along with Records One, Inc. and the University of Pittsburgh's Health Information Management Department will initiate the development of software products that utilize natural language processing to extract cancer data from the electronic medical record into a cancer registry repository automatically.

Secure smartphone applications (Care to Share app) will also be developed so that patients can add to the quality and completeness of the cancer data. Patients and providers will be able to talk to each other through the Care to Share app regarding their care, treatment, and follow-up.

A focus on breast and prostate cancer cases will be used in the pilot testing of the technology. Several types of healthcare facilities and software vendors may serve as users of the new technology.

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Lisa Shufro Advisor Replied at 3:45 PM, 2 Jan 2015

Hi Valerie -

Thanks for your ideas here. I absolutely agree with you that making data useful and interoperable across care platforms is a major leverage point to improving care and knowledge. To that end, reducing the friction of capturing and transferring that information without the use of humans is a really important place to focus.

I know that engaging the patient and the caregiving community is a major hurdle, and my questions about your idea relate to the development of an app. While it's clear to me why the health IT community would benefit, the change in behavior required for patients and caregivers to provide the info is less compelling. I would encourage you to look at a few platforms out there that "ride-along" existing patient/caregiver interactions. Without vouching for the impact or credibility of any of the following, at least here are a few I'm aware of in this space:

1) SmartPlatforms.org, led by Isaac Kohane, which focuses on the array of data captured in clinic but makes it interoperable and valuable to many sources.

2) AdhereTech, developed by Josh Stein. This technology for a smart pill bottle is not so much what is interesting to me. The internet of things is inevitable. But I think what's interesting is that he has (at least at one time) a vision of the platform of apps that could be developed for multiple uses by the patient and caregiver community. It's similar to all the apps that plug into the salesforce platform

3) MedCPU, which uses NLP in clinical records to increase patient safety. Combine this with the patient/health coach open EHR that has been developed by Iora Health, and you might already have components of the system you're seeking.

4) I think it's also well worth closely following the movements of Apple and Co in the anticipatory computing rage coming down the pike. For example, if an identified caregiver is noted at the location of the patient, the smartphone could prompt a series of short questions to provide to the registrars you mention.

Hope this helps, and wishing you luck!

Best,
Lisa

Valerie Watzlaf Replied at 7:36 PM, 2 Jan 2015

Thank you Lisa. We will review the platforms you provided. The MedCPU looks very interesting.

Thanks again.

Valerie

A/Prof. Terry HANNAN Advisor Replied at 6:33 AM, 3 Jan 2015

Lisa, can you explain/expand on what you mean by the following statement? "While it's clear to me why the health IT community would benefit, the change in behavior required for patients and caregivers to provide the info is less compelling".

Lisa Shufro Advisor Replied at 10:56 PM, 3 Jan 2015

Sure Terry. What I mean is that in my experience working with startups, you can't underestimate the deterrent of changes in behavior required of the end-user. In other words, no matter how important it is to the patient and the caregiver to provide information, I'm skeptical that enough of them will enter data consistently enough to provide enough useful information to the registry. That's why I think passive collection of data, or use of anticipatory computing technology is ultimately going to prove more useful. Hope that clarifies! - Lisa

A/Prof. Terry HANNAN Advisor Replied at 3:15 PM, 4 Jan 2015

Lisa, thanks for this excellent clarification. I am in full agreement with your views and these emphasise how we have to think laterally to design systems that facilitate data and information capture by the patient and carers. I also believe that the "clinicians" require technologies and a CULTURE CHANGE [See L. Leape, "Five Years After To Err Is Human. What have we learned?"] to enter high quality data on a consistent basis. Terry

Sarah Patrick Replied at 10:12 AM, 6 Jan 2015

I have been working on cervical cancer surveillance needs with colleagues in Guatemala thanks to my former Fulbright student, Christian Alvarez, who wrote the cervical cancer plan for the country on contract with PAHO. There is no cancer registry currently in place. Without standardized medical records and numerous NGO screenings that take place without a centralized medical record for the patient, even the onerous job of medical chart abstraction (let alone EMR code searching) is rife with missing, incomplete, or non-standardized information, so we were looking for a way to empower women to be the (or a major) source of their own data tracking. If you are interested in working together, please touch base ().

This Community is Archived.

While this community is no longer active, we invite you to review and recommend past posts and resources. Membership for this community is closed, but we hope you'll join us in one of the many other communities on GHDonline.

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