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Hacking Health in Hamilton Ontario - Let's hear that pitch!

What compelled me to register for a weekend Health Hackathon? Anyway, I could soon be up to my ears in it. A pubmed search on Health Hack...

Wednesday, January 29, 2014

Public Health Informatics or Consumer Health informatics

What is the difference between public health informatics and consumer health informatics? First a basic knowledge of the different kinds of healthcare governance systems used in the country where you are situated is needed for the right context. Being from Canada, I understand we essentially have a public supported healthcare system. Our next door neighbour has Obamacare. The land of our Mother Queen has the NHS, which is apparently one of the world's largest employers, right up there with the Chinese military.

I have seen textbooks on public health informatics, and I imagine there are some for consumer health, but most of the evidence points to consumer health information being everywhere. The informatics side of it is more difficult to contend with. And when you consider that most of the known world doesn't have public or government supported healthcare, you are really looking at private, for profit, or consumer health.

The evidence for "for profit" healthcare is that it is bad for your health and might kill you. This is to disregard for a second dangers to health in the ordinary run of the mill statistics on patient safety, medical errors, hospital viruses, etc. The hippocratic or medicine buddha vow universalistic compassionate purpose for free medical treatment also comes with a price tag in limited resources, skills, and knowledge. Humans helping humans out of love is after all the only principle worth trying to apply to improving quality of life as a return on investment.

With the push of IT into healthcare comes the warning that applying IT into standards of care and therapeutic interventions requires evidence that it works, is cost effective, and is generally worth the change management stress of the push factor. Would public health support more IT for patients as part of the general healthcare standard of care if it is proven to reduce hospital costs, improves quality of life, reduces errors, etc? You betcha. Probably though a lot of IT projects for healthcare start out experimental and are only available through private networks and citizens with deeper pockets. That is a consumer health choice.

Here is a Gunther Esyenbach definition of "Consumer Health Informatics" from a BMJ article:

Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems. Consumer informatics stands at the crossroads of other disciplines, such as nursing informatics, public health, health promotion, health education, library science, and communication science, and is perhaps the most challenging and rapidly expanding field in medical informatics; it is paving the way for health care in the information age.

That is all well and good of course, but it means almost anything. When you talk about Public Health Informatics, you have a more dedicated field of investigation into such things as infectious disease, pandemics, syndromic surveillance. It always makes me think of Google Flu, which is an insane way search queries on Google can predict disease outbreaks better than the CDC or other public health surveillance systems. And then there is the phenomenon like HealthMap, which really illustrates this well.




Speaking of maps, lets take a look at what a consumer health information map of medicine would look like. It just so happens that the NHS has exactly that, a Map of Medicine, or "See what your doctor can see with Map of Medicine Healthguides". When you first go to this website you need to accept a disclaimer. I didn't read it but I think it has to do with something like "you are about to read health information that only an expert like your family doctor knows anything about so for the love of Christ be careful from here on in". What the heck, I will try to copy and paste that disclaimer in here because it is so interesting (after the diabetes flowchart).

In reality, I was actually kind of shocked when I clicked on one of these healthguides and found it was a information flowchart right out of 1960s programming land. I will link to the one for Diabetes here. The sheer brilliance of the healthguide that makes it different from just your average consumer health information page (which it strongly asserts it is not meant to be for), is that when you click or mouse over the little "i" for "Information", you get a flash or javascript window with detailed information about that condition on the path for the flowchart stage. A PDF printable view will give you all the information bubbles from the flow chart. Here is only the flowchart:


Welcome to Map of Medicine Healthguides

Patients and carers

Disclaimer

The Map of Medicine is intended for use by healthcare professionals in a clinical setting. The Map of Medicine should not be used as a substitute for a healthcare professional's diagnosis or clinical decisions, by healthcare professionals or other users.
The treatment responsibility of a patient lies solely with the healthcare professional responsible for that treatment. The Map of Medicine is not exhaustive and may not reflect the most recent medical research. By continuing to access the Map of Medicine, you agree to accept our Terms and Conditions.

Healthcare professionals

If you are an NHS user in England, excluding London, please access the Map of Medicine using either your Athens login or your Smartcard. This will also provide access to care maps developed for use in your local area.
If you are a healthcare professional working in an area without a licence for the Map of Medicine, please register to access national care maps.
For more information about Map of Medicine licensing and access, please visit our website. Map of Medicine licensing







Sunday, January 19, 2014

A different kind of google glass - contact lens that detects glucose for diabetics


Google X is a "moonshot" group of experimental projects Google is exploring. A recent news story about one of these projects is hitting the media called Google Contact Lens. The premise behind this is one of the holy grails of diabetes research, finding a "pin-prick-less" way to test for glucose levels. I did a study of the various devices under-going development and the history is a bitter one of trial and error, fraud and failure. To my knowledge, there is no FDA approved device yet that can do this. I will set up an email alert for more news about this in the future. CBC technology coverage is great. Here is some info from our working paper on a mobile solution for self-management of diabetes:


A non-invasive technique capable of measuring blood glucose concentration with accuracy equal to or better than the current chemical glucose meters may improve compliance for glucose monitoring. 53 Considerable efforts have been made by several scientific research groups and organizations in the past few decades to develop non-invasive blood glucose monitors.  Diverse optical approaches have been proposed to achieve this objective. These approaches include polarimetry, Raman spectroscopy, near-infrared (NIR), absorption and scattering and photoacoustics. These techniques appear to be promising, but have limitations associated with low sensitivity, accuracy and insufficient specificity of glucose measurements at physiologically relevant levels. 53 Non-invasive continuous Glucose Monitors like GlucoWatch G2 Biographer and Continuous Glucose Monitoring (CGM) which are FDA approved have been found unreliable for detecting hypoglycemia. 54 There are non-invasive solutions available in Canada for measuring blood glucose level by BioSign Technologies’ UFIT Care. 25 However, this product is yet to be approved by Health Canada and therefore, cannot be used.
And various references to the above:

23. Medgadget. MedGadget Web site.
http://www.medgadget.com. Published 2009. Updated 2009. Accessed november 2009.
24. Pain-free precision: Clinical trial reveals new option for blood sugar testing. . 2002;1 No 2.
25. Biosign Technologies Inc: Online Health Monitoring, Getting the Numbers Right Fact Sheet. http://www.biosign.com/Web_Files/factsheet_biosign.pdf. Updated 2009november 2009.
53. Kirill V, Mohsen S, Montamedi M, Esenaliev R. Noninvasive Blood Glucose Monitoring With Optical Coherence Tomography. Diabetes Care. 2002;25(12). http://care.diabetesjournals.org/content/25/12/2263.abstract.
54. Accuracy of the GlucoWatch G2 Biographer and the Continuous Glucose Monitoring System During Hypoglycemia. Diabetes care. 2004;27(3). http://care.diabetesjournals.org/content/27/3/722.abstract.

Thursday, January 16, 2014

Google broke Canada’s privacy laws with targeted health ads

This story is currently receiving a lot of media attention currently and I reposted they headline and story from The Globe and Mail:

http://www.theglobeandmail.com/technology/tech-news/google-broke-canadas-privacy-laws-with-targeted-ads-regulator-says/article16343346/?cmpid=rss1

I left the word "watchdog" off the headline because the Canadian Privacy Commissioner isn't a watchdog. There is no privacy police but there is a privacy policy. Not a police dog, but a policy dog. Google might pay a fine? No problem for Google probably. Not many privacy statutes have teeth is what they say.

This story reminds me again that I want to write more about the face-off between Public Health and Consumer Health. This is a prime illustration: Google is consumer health using targeted health ads based on your browsing search inquiries, and the Government of Canada is Public Health, the collective servant of protective measures based on principles that come somewhere other than making a profit - serving the common good by way of utilitarian ethics.

Most of the time when it comes to health information, I am highly sympathetic to "Dr. Google".  I will pick up this thread later because I want to say more about how I see the differences between Public Health and Consumer Health will have an impact on informatics.

If anyone wants me to remove the AdSense ads from this blog, because you are offended by the personally invasive use of targeted ads relating to your personal health search on Google, please let me know. That's the way the cookie crumbles, as they say.




Friday, January 3, 2014

Research Ethics Board Decision Making Maximers or Satificers

A fellow McMaster eHealth M.Sc. graduate, Yervant Terzian, has an interesting post on his blog "Yervant's Musings: Healthcare Through a Patient's Lens". He sent me an email asking what I thought because I attended the same conference of research ethics board professionals - the Canadian Association of Research Ethics Boards (CAREB). Yervant is now a community member of a research ethics board and I would like to welcome him to my world! I have been a research ethics board administrative professional for coming up to 14 continuous years.

Here is the link to Yervant's post:
http://yterzian.wordpress.com/2013/12/23/are-reb-members-maximizers-or-satisficers-ethics/

The talk given by Dr. Ivor Pritchard was aimed at REB professionals. Dr. Pritchord is well known in US bioethics and research ethics professional organizations (acting director of US Human Health Services Office of Human Research Protections) , but has been invited to speak at Canadian REB conferences before.  I believe that he holds a PhD in Philosophy. His theory revolves around research on decision making aiming to illustrate how REB members make decisions when they review research projects for clearance. I don't believe the basis of the talk was on his own research into this subject though I may be wrong.

Let me first say that I think there needs to be more research on REBs - on all aspects of it. Research by Dr. Will van den Hoonaard on Canadian REBs was very valuable on describing the kinds of REB cultures that exist in Canada, as well as arguing how a biomedical basis formed the basis for the ethics policies - not easily extended to social science and qualitative research. There has been some research by Rachel Zand, current CAREB president, on how to educate, train and retain REB members. My colleague Dr. Brian Detlor and I presented on own research on REB information systems used by Canadian REBs at this very same conference. We have just recently posted the results on our website <here> but this will also be posted to the CAREB website this month I am told.

I agree with Yervant that the Maximizer vs Satisficer notion on REB decision making might not be the best way to describe the behaviour of REB members because it comes from a consumer behaviour model. Members of REBs are mostly volunteers, and some ethics board gurus have argued that unpaid volunteer membership on REBs is the only way to preserve ethical integrity in this work. True though, that REB members need incentives to do the ever increasing work load. True though, that altruism alone ought to be the guiding light for contributing to the integrity of research. True it is, that the behavioural effectiveness of REB members is needed more often than the efficiency of REB systems.

Applying an economic "Rational Choice Theory" to REB metrics is one way to approach an analysis for insight. However, I think the real effectiveness for this line of reasoning is more applicable for the ethics of healthcare resource allocation, which is the subject of extensive bioethical debate. Rational choice, as well as maximizers and satisficers, can be applied there, and the scenarios are very similar. Making decisions for how healthcare resources can be allocated, especially in underdeveloped countries, is heart breaking at the best of times. Should one patient be allowed a million dollar support system for an extremely rare condition when the same money can be allocated to improve the quality of life for thousands of others? Closer to home, why is physiotherapy not covered by Ontario health insurance? Why are dental services not covered? etc.

The scenarios for decision making used in our break out groups at the conference that Dr. Pritchard presented and that Yervant discusses are life and death decision scenarios. Not all REBs review research that involves life or death risks. Mostly it is medical REBs that review clinical trials involving experimental drugs for persons with terminal or chronic illness that need to decide on risks of living or dying. The risks in social science and qualitative or behavioural research are not so overtly black or white or of that nature.

Another way to look at this is that REB members as Maximizers are more likely to engage in "ethics creep" - spending a disproportionate amount of time on the minutiae of a protocol instead of the major issues. On the other hand, it would be good to have Maximizers when there are research proposals that do have major issues. For the 90% of social behavioural research reviewed by social science/qualitiatve/behavioural REBs, being a Satisficer is the way to go, because this 90% will be research that is not greater than minimal risk, or risk experienced by participants in their everyday life. Ethics review can be done on a Satisficers'  "it is good enough" basis, even though it is not desirable to do so for the purposes of maintaining high academic standards of research quality.

Yervant proposes a "Traits" approach to examining how REB Members make decisions in the review of ethics applications. Perhaps that might be interesting, but I am not sure how it would improve the effectiveness of REB review. Would REB administrators start to recruit new members based on certain "traits"?

The book You Are What You Choose by Scott De Marchi and James T. Hamilton introduces the TRAITS model and identifies 6 categories for an individual’s decision-making process: Time, Information, meToo, Altruism, Stickiness, and Risk

Certainly, we don't want REB members who will try to exert their own agendas, biases, etc., or who would otherwise be disruptive at meetings, or totally non-present wrapped in a cocoon of silence.  In fact, REB members are assigned research ethics applications to review based on their disciplinary expertise first of all, and secondly, according to known personal interests or other areas of knowledge that they might possess. A theory of "Expert Systems" might also be applicable here in case REB members are ever replaced with IBM Watson type systems.

Anyway, I could probably write more like this for a while, but the relevance for eHealth is drifting away. Thanks very much Yervant for applying your insights to the work of REBs!