Fitbit and Personal Health Informatics

A surprise gift for father's day was a Fitbit ChargeHR. The HR stands for Heart Rate, that measures beats per minute (BPM). It doesn't measure blood pressure, and I don't think any device like this on the wrist will be able to do that soon. I have been counting my walking distances, steps up stairs, calories and sleep activity for about a week now. It feels good to have entered the world of the "quantified self "and big data personal health informatics at more than just a theoretical level, as I have been doing on this blog for the past 4 years. I actually have a blog post about Fitbit from 3 years ago <here>!

The data is sent wirelessly to a small "dongle" on my MacBook anytime I am within 20 feet of it. I was surprised to see how this data easily integrated with Telus (Microsoft) Health Space (Healthvault) from the Fitbit.com login settings account. The power of the API is truly awesome.

As I knew before when I was looking at reviews for smart watches, the Fitbit ChargeHR is not a great watch for telling the time. However, one advantage is I find myself saving a lot of time by not looking at my watch to find out what time it is so often. All in all, I find myself wanting to wear it more than the old watch.

Sleeping with the watch is perfectly unobtrusive. There are continual double green sensor lights flashing for the BPM readings but it is hidden under the wrist. At a different viewing angle you can see the green lights. Double tapping at night will illuminate the clock (and day of the month) but during the day it is very difficult to see the digital time in glare of light of day. When you wake in the morning, sleep activity data is automatically transmitted to the MacBook or the Fitbit app on the iPad. via the dongle. The sleep data is a bit hard to interpret. Did I really only get 5 hours sleep? Anyway, I am starting to make some sense of the times I may have been awake or restless.

If you set a goal for 10,000 steps it will buzz on your wrist when you achieve the goal. You are also sent an email congratulating you, which is repeated in the weekly email data digest updates. I tracked food consumption for data on calories, sodium levels, etc. for a few days, and this is very interesting information for me. Since I have not really changed weight since I was a teenager, I don't really have any weight goals, but I know I can align readings from the gym equipment which tracks BPM and calories burned with the Fitbit. When I am not going to the gym, I can utilize those readings. But like I said, watching calories burned is not a science I follow much because of my metabolism.

Even though the data is integrated into the Telus HealthSpace, which is a free personal health record if you have a Microsoft login, I still don't find myself using the personal health record that much (yet). I also have a McMaster PHR (former MyOSCAR) and a Health and Wellness Companion PHR through my employer's health insurance company, in both of which I have just stepped into the shallow end of the pool. I tend to keep a Word document log and paper file of health related events a lot more. If the PHR was integrated with our family health team, I am sure I would use it more.

So, I think we are still a way off from wider adoption of personal health records as integrated tools for the physician's electronic medical record. A lot depends on more research, and of course evolving software breakthroughs like APIs. I am a community volunteer with the McMaster University Family Medicine TAPESTRY program, and I can see first hand the uptake on PHRs and how much education and training is required before they are being used effectively. On our visits to seniors in our communities we also help promote the use of the McMaster PHR. Like any technology, and the toothbrush comes to mind, use comes from developing good habits, as well as promotion from health care professionals.

Because we have entered a digital culture, many people will be entering a personal health record, not through their family medicine clinic, but through some form of personalized health informatics, like Fitbit data, or smart phone apps. There will be a point when physician medical practices will want to buy into accessing or making that data available.

Clinical Research Informatics

American Medical Informatics Association
https://www.amia.org/applications-informatics/clinical-research-informatics

Canadian Primary Care Sentinel Surveillance Network:
 http://cpcssn.ca/

IRB Class Model
 http://irb-dam.bmi.utah.edu/v1/index.htm?goto=3:1:181

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3392857/

Clinical research informatics: a conceptual perspective

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3392857/

Michael G Kahn¹ and Chunhua Weng²

Author information ► Article notes ► Copyright and License information ►

See "Practices and perspectives on building integrated data repositories: results from a 2010 CTSA survey" in volume 19 on page e119.

See "The design and implementation of an open-source, data-driven cohort recruitment system: the Duke Integrated Subject Cohort and Enrollment Research Network (DISCERN)" in volume 19 on page e68.

See "Implementation of a deidentified federated data network for population-based cohort discovery" in volume 19 on page e60.

See "The Hub Population Health System: distributed ad hoc queries and alerts" in volume 19 on page e46.

See "Evaluating alert fatigue over time to EHR-based clinical trial alerts: findings from a randomized controlled study" in volume 19 on page e145.

See "Evaluation of a prototype interactive consent program for pediatric clinical trials: a pilot study" in volume 19 on page e43.

See "A patient-driven adaptive prediction technique to improve personalized risk estimation for clinical decision support" in volume 19 on page e137.

See "Use of electronic health record data to evaluate overuse of cervical cancer screening" in volume 19 on page e96.

See "Adjusting outbreak detection algorithms for surveillance during epidemic and non-epidemic periods" in volume 19 on page e51.

See "Evaluation of record linkage between a large healthcare provider and the Utah Population Database" in volume 19 on page e54.

See "Missing values in deduplication of electronic patient data" in volume 19 on page e76.

See "Informatics and data quality at collaborative multicenter Breast and Colon Cancer Family Registries" in volume 19 on page e125.

See "Quality evaluation of value sets from cancer study common data elements using the UMLS semantic groups" in volume 19 on page e129.

See "Automated discovery of drug treatment patterns for endocrine therapy of breast cancer within an electronic medical record" in volume 19 on page e83.

See "Development of an optical character recognition pipeline for handwritten form fields from an electronic health record" in volume 19 on page e90.

See "Automated identification of extreme-risk events in clinical incident reports" in volume 19 on page e110.

See "Usability-driven pruning of large ontologies: the case of SNOMED CT" in volume 19 on page e102.

See "Unified Medical Language System term occurrences in clinical notes: a large-scale corpus analysis" in volume 19 on page e149.

See "Big science, big data, and a big role for biomedical informatics" in volume 19 on page e1.

This article has been cited by other articles in PMC.

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Abstract

Clinical research informatics is the rapidly evolving sub-discipline within biomedical informatics that focuses on developing new informatics theories, tools, and solutions to accelerate the full translational continuum: basic research to clinical trials (T1), clinical trials to academic health center practice (T2), diffusion and implementation to community practice (T3), and ‘real world’ outcomes (T4). We present a conceptual model based on an informatics-enabled clinical research workflow, integration across heterogeneous data sources, and core informatics tools and platforms. We use this conceptual model to highlight 18 new articles in the JAMIA special issue on clinical research informatics.

Keywords: Clinical research informatics, clinical and translational research, visualization of data and knowledge, knowledge representations, methods for integration of information from disparate sources, data models, data exchange, knowledge bases, knowledge acquisition, knowledge acquisition and knowledge management

Research Kit Demo by Jeff Williams at Apple Special Event, March 2015

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Personal Health Record Push to Apps

I sometimes follow the HL7 group on Personal Health Records. I received this email from a member of the group. I find it interesting that pushing medical records to a personal health record is becoming better:

NBB4C makes it easier for providers to share health information with their patients so that their patients can do what they want with it.

February 2015

Clearing the Way for Patients to Get Access to their Data National Association for Trusted Exchange Unveils New Trust Community for Exchange with Consumers WASHINGTON, D.C. (February 3, 2015) – The National Association for Trusted Exchange (NATE) today kicked off its new NATE Blue Button for Consumers (NBB4C) Trust Bundle at the 2015 ONC Annual Meeting with a surprise display of interoperability in patient-mediated exchange.  Shortly after NATE’s announcement, Greg Meyer, Director, Distinguished Engineer, Cerner Corporation, demonstrated how a provider using a Cerner electronic medical record (EMR) can simply push a patient record to the patient's personal health record (PHR), in this case to the Humetrix iBlueButton app running on the patient's smartphone. The new NBB4C Trust Bundle helps relying parties to identify consumer facing applications (CFAs) that meet or exceed criteria considered to be the most important characteristics of a trustworthy steward of consumer health information, while still enabling patients to benefit from the value of having access to their health information.  Participation in the trust bundle will facilitate secure exchange of health information from provider-controlled applications to consumer-controlled applications such as PHRs using Direct secure messaging protocols. “Thank you to my colleagues at Cerner and Humetrix for helping NATE demonstrate the capabilities of the new NATE Blue Button for Consumers Trust Bundle at the ONC Annual Meeting.  Greg’s demonstration today shows that the NBB4C is ready now to enable real world exchange between provider-facing applications and consumer-facing applications, empowering the consumer to get access to their data,” said NATE’s CEO Aaron Seib.  “Our industry achieved a major milestone today.  We studied the issues around securely sharing information from providers to patients and together we took a leap of faith.  Consumers across the country will now have more control over their care.  NBB4C gets the information flowing to where it should be: in the hands of the patient.  I look forward to the day when patients across the nation routinely download their health information into a consumer-facing application of their choice and use it to improve their lives and the lives of those they love.” The NBB4C Trust Bundle is the result of the next generation of NATE’s ongoing PHR Ignite Project and incorporates lessons learned from NATE’s administration of the Blue Button Consumer Trust Bundles.  Over the past year, NATE and a task group made up of thought leaders in the patient-mediated exchange space worked together to develop a set of criteria and expectations that balances what is a ‘must have’ for today and what can wait until tomorrow, what is practical as a starting point and what is a showstopper that would kill consumer engagement if introduced.  In November 2014, NATE crowd sourced the trust framework, calling for and receiving comments from across the industry.  In January 2015, the NATE Board of Directors approved the workgroup’s recommendation for release into production. “The NBB4C establishes a practical framework that will enable patients to securely exchange health information with their providers without burdening the patient with unnecessary steps to obtain their data and share it with whomever they choose,” said MaryAnne Sterling, Consumer Ombudsman for the NATE Board of Directors.  “As a long time caregiver for my aging parents, this work is important to all of us who manage healthcare on behalf of others.  I have confidence that applications participating in the NBB4C will meet or exceed my expectation that my family’s health information will be confidential and secure.” Interested CFAs may begin onboarding to the NBB4C Trust Bundle now at http://nate-trust.org/trustbundles.  Stakeholders interested in participating in the next phase of NATE’s work in consumer-mediated exchange should consider NATE membership or subscribe to news from NATE’s PHR Community. # # #

NBB4C makes it easier for providers to share health information with their patients so that their patients can do what they want with it.

About National Association for Trusted Exchange The National Association for Trusted Exchange (NATE) brings the expertise of its membership and other stakeholders together to find common solutions that optimize the appropriate exchange of health information for greater gains in adoption and outcomes. Emerging from the Western States Consortium, a pilot project supported by the Office of the National Coordinator for Health Information Technology (ONC), NATE was established as a not-for-profit organization in May 2013. Consistent with NATE’s mission to address the legal, policy, and technical barriers that inhibit health information exchange between entities within a state and across states, NATE leads and participates in a number of ongoing and emerging projects in the HIE domain. NATE has been operating its own Trust Bundles in production since November 2012 and recently took over administration of the Blue Button Consumer Trust Bundles.  Working with a broad set of stakeholders through multiple task forces, crowdsourcing and a call for public comment, NATE is proud to make available the first release of NATE's Blue Button for Consumers (NBB4C) Trust Bundle beginning in 2015. About Cerner  Cerner’s health information technologies connect people, information and systems at more than 18,000 facilities worldwide. Recognized for innovation, Cerner solutions assist clinicians in making care decisions and enable organizations to manage the health of populations. The company also offers an integrated clinical and financial system to help health care organizations manage revenue, as well as a wide range of services to support clients’ clinical, financial and operational needs. Cerner’s mission is to contribute to the improvement of health care delivery and the health of communities. Nasdaq: CERN. For more information about Cerner, visit cerner.com, read our blog at cerner.com/blog, connect with us on Twitter at twitter.com/cerner and on Facebook at facebook.com/cerner. As of February 2, 2015, Cerner Corporation acquired Siemens Health Services.  Certain trademarks, service marks and logos set forth herein are property of Cerner Corporation and/or its subsidiaries. All other non-Cerner marks are the property of their respective owners. About Humetrix Humetrix has pioneered the development of innovative consumer-centered IT solutions over the past 15 years, which have been deployed around the world.  The company’s award winning Blue Button enabled apps are the mobile embodiment of the U.S. Federal government Blue Button initiative available to more than 150 million Americans. Humetrix’s HHS award winning emergency and disaster preparedness mobile apps are now being advocated by EMS agencies across the US and were demonstrated at the White House Innovation for Disaster Response and Recovery Demo Day last summer. For more information, visit www.ibluebutton.com and www.humetrix.com.

Copyright © 2015 National Association for Trusted Exchange. All rights reserved.
Contact email: meryt.mcgindley@nate-trust.org

You are receiving this message because you have an interest in health information exchange.

Personalised Medicine and/or Personalised Health Information Services

I came across a website and eHealth service recently called Medivizor. Seems like I have had the wrong idea about what "personalised medicine" means. I needed to enter it as a search term in Pubmed and discovered 932 articles that had nothing to do with my idea of it. That is, my idea was more in line with the health information services provided by Medivizor. The articles I found in Pubmed were more like "personalized genomics or pharmaceuticals". For example, this article: "Metabolomics as a tool for drug discovery and personalised medicine. A review."

While there may be nothing wrong with that, especially if they want to use genomics to replace parts in me, my idea had more to do with the kinds of health information one should be getting through a personal health record (ePHR), depending on one's own unique state of health. But if I do a Pubmed search on "personalised medicine and personal health records", I get almost exactly what I am thinking about (but only 6 articles). The first article is called:

Creating personalised clinical pathways by semantic interoperability with electronic health records.

Wang HQ, Li JS, Zhang YF, Suzuki M, Araki K.

Artif Intell Med. 2013 Jun;58(2):81-9. doi: 10.1016/j.artmed.2013.02.005. Epub 2013 Mar 5.

People search the net for health information and Google is a vast resource. It is better to narrow the scope and only get the health information related to one's personal conditions or searching - be they chronic or not - and to make sure that information is trusted. The Optimal Aging Portal is one such service, but at the current time, that information isn't being personalised or fed into individual ePHRs. All is not lost: patients do have their family doctor for personalised medical attention. End of story.

Getting that trusted health information, if it isn't directly from your family doctor, is a work of monumental scientific promise. A recent overview article that caught the interest of the health informatics community is found here: "Stop Googling your health questions. Use these sites instead":
 http://www.vox.com/2014/9/8/6005999/why-you-should-never-use-dr-google-to-search-for-health-information
That's a lot of knowledge translation to get healthcare consumers to wise up about the health information they are seeking.

The best idea would be if the there is a health informatics professional(s) in the family health team who can work in consultation with the family doctor so that personalized and trusted health information most relevant for them is getting to them through the ePHR. Can't leave it all up to AI and algorithms, but who knows?

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