Thursday, April 17, 2008

Mathematics and Social Justice: Robert Moses and Radical Equations

I'm reading a wonderful book by Robert Moses about the Algebra Project, a movement to empower young poor children of color by giving them resources to develop the mathematical skills they need for success and opportunities in the larger society. It's a welcome contrast to so-called "liberal" do-gooder tools like Richard Cohen, who apparently think discouraging young women from learning technical skills is somehow a desirable accomplishment.

I've just started the book--it's my bus reading--so I don't have a lot to report yet, but the roots of this project reach back to Moses' involvement in voter mobilization in Mississippi during the Civil Rights movement. He strongly implies that it's a straight shot from the one movement to the other; I am looking forward to how he connects the dots, and perhaps there are direct lessons that Pwof Ansanm can apply from his work to teacher empowerment in Haiti.

Labels: , ,


Read more!

Sunday, March 16, 2008

A new direction

What does a newly-fledged young* scientist do to avoid leaking out of the "broken pipeline" and getting lost, in a stagnant funding environment**, where grant money to support research is getting harder to obtain?

She becomes an entrepreneur! (Actually, there is precedent: Benjamin Whorf supported his linguistic work with a day job as an insurance agent, so I'm in good company.)

I'm actually taking a three-pronged approach to building financial and logistic resources to support my research, in order to diversify and minimize risk:



  1. Donations. Since I am not a financial or legal specialist myself, I am currently working with grants administrators at a variety of appropriate philanthropic organizations (depending on project) in order to ensure full compliance with all state and IRS regulations regarding philanthropic donations.

  2. Purchases. I am developing an offering a wide variety of products and services whose proceeds go to support my research. I'll post a catalog here when it's ready.

  3. Investment. This is the part about which I will probably blog the least, simply because the state guy I am working with cannot provide guidelines for what is appropriate and what is not. There are a number of rules which a Small Corporate Offering Registration (SCOR), such as I am preparing for continuing education classes I am developing, fall under. I am preparing a microcapital offering with all relevant documentation under relevant state and SEC regulations.

    One of those regulations is that all advertising for the offering has to be approved in advance. I asked about blogging about my SCOR, and the guy I spoke to didn't know what a blog was. Needless to say, the policy has not been set, and since the last thing I want is the SEC coming after me, I'll only blog about my experiences putting together a SCOR if I can get assurance that it won't be an issue. If not, then not a peep--I'll talk about it only in meatspace, in Washington state, as per the residency requirements. So you may hear about it here, or not, depending on what they decide their rules are (or are not) about SCOR blogging.



All of these income streams converge to support my commitment to Research Projects, Education, Service, and Outreach in three areas:



  • Basic Science Informatics: Sun Bear Endangered Species Reproduction Knowledge Representation (KR) Project (culminating in 40% Full-Time Equivalent [FTE])



    1. Knowledge representation and computerized reference ontology of bear anatomy. Develop and publish natural history of organ development in hibernating vs. non-hibernating species. Research questions: do these differences provide any information re: development of hormone-resistant cancerous tumors in those organs (breast and prostate) in humans? What are the medical implications of the different kinds of cells in bears and in humans?

    2. Anatomical atlas-—publish second edition of reference atlas for sun bear cytology, and make it freely available to wildlife conservationists in limited-resource areas.



  • Clinical Informatics: Evidence-Based Massage (40% FTE)



    1. Best Practices in Massage: What are the information needs of the stakeholders in complementary and alternative medicine (CAM), and what information-gathering, information visualization, and information-presentation methods fit those needs best under what circumstances?

    2. Research Literacy for Massage Therapists textbook—finish contract (almost halfway through now!)



  • Public Health Informatics: Information Access (20% FTE)



    1. What are the information needs of practitioners, patients, and software developers in the development of an open-source electronic medical record (EMR) in Haiti and other low-resource locations, and what information-presentation methods best meet those needs?

    2. What are the information needs regarding neonatal skin barrier development and biochemistry of traditional remedies of mothers and caregivers of newborn infants in Nepal, India, Bangladesh, and Pakistan? What information would they require in order to synthesize the beneficial aspects of traditional infant oil massage with what we know about best practices for which oils build up the skin barrier against infections and hypothermia, and which oils hinder that barrier development?

    3. What information about massage and other self-care could improve the quality of life of Haitians living with the effects of gross lymphatic swelling caused by worms, as well as giving their caregivers and families effective ways to support them? What are the best ways to provide that information in such a resource-limited area?





As this is my job now (though I may take other day jobs as appropriate to support this initiative), I'll be blogging about it more regularly here. That means kibitzing at other blogs less, but for now, that's ok.





* 49 years old, actually; 50 on May 1. But the term "young researcher" doesn't refer to chronological age, but rather to how long it's been since the scientist finished her degree. Since I graduated in August 2006 with my PhD, I'm a "young scientist", academically speaking.

** Actually, I agree with Orac that the problem isn't just as simple as blaming the NIH and the Bush administration. No matter--I'm not talking about why there is a problem, only about what I'm going to do to solve its impact on my end.

Labels: , , , , ,


Read more!

Wednesday, October 03, 2007

PHI conference: Hamish Fraser and EMRs for the developing world

One of the high points of the PHI conference I went to week before last was getting to meet Hamish Fraser and hear him talk about informatics tools to improve drug management and safety in developing countries. He's doing some very important work in Peru and Haiti, so his work has the potential to have a major impact for some of my colleagues in both countries. After his talk, I got to meet him and tell him how impressed I am with the work, especially given some particular infrastructural challenges in Haiti. He is a very gracious and knowledgeable man, and I hope we have the opportunity to collaborate at some point.

He noted that challenges in treating multiple-drug-resistant tuberculosis (MDR-TB) are just one of many obstacles facing an electronic medical record (EMR) system in Haiti. The effective use of drugs for that and other conditions depends on:

  • accurate diagnosis and case detection;
  • understanding appropriate treatments for the conditions in question;
  • accurate and appropriate prescribing for those conditions;
  • available drug supplies for those conditions;
  • correct and timely dispensing of those medications;
  • monitoring for adverse drug reactions and responding promptly when they are detected;
  • ensuring adherence to the medication regime and continuity of care.


The geography, economy, infrastructure (lack of good roads, for example), and other factors in Haiti make these goals challenging; what I hope to do in future research is to explore ways in which informatics can compensate for these challenges. Dr. Fraser and his research group are already taking the lead in developing applications to address these issues. For example, HIV treatment in Haiti requires, among other things, warehouse and pharmacy management systems, and Dr. Fraser's group is addressing this question using OpenMRS and collaborative development.

Rwanda Partners In Health has set up 6 clinics for HIV and other diseases, and an EMR is currently operational in all sites. They are now implementing a Haitian pharmacy system, and Partners In Health has been asked to set up an EMR system for all planned HIV treatment sites in the country. Additionally, they are scaling up the OpenMRS system to other sites and countries, and collaborating to develop a new design of an EMR system in developing countries. Current or future sites include Rwanda, Kenya, Lesotho, South Africa, Tanzania, Uganda, and Zimbabwe. Projects collaborating with OpenMRS include a lab system in Rwanda with HL7 linked to OpenMRS; the Baobab system in Malawi; the Africa Center, South Africa; Columbia University's Millennium Villages project; the D-TREE handheld system, South Africa; and Google's "Summer of Code" projects.

Important questions remain to research, of course:

  • how can we improve the use and safety of drugs in developing countries?
  • how can we assist in the meticulous observation of therapy which is required for these regimens?
  • what are the next steps in the develeopment of treatment strategies for MDR-TB, HIV/AIDS, and other chronic diseases?
  • we need more evaluations! For example:

    • effectiveness and impact of the information systems;
    • how well do the systems function in resource-poor areas?
    • how to ensure high-quality and timely data entry?
    • how can we reduce the time and effort required to use the systems?
    • and most important: through the use of these systems, can we show improvement in patient care?



Challenges include training; support and reliability of equipment and software; data management and quality control; and sustainability. He concluded by noting that many tools developed to improve drug use and management in the US can be adapted for use in developing countries. Additionally, the lack of redundant systems in these resource-poor areas only increases the importance of good information systems.

The questioners in the Q&A session afterward raised some very good points: One expressed heartfelt thanks for bringing up lesser-known, chronic diseases, which don't always get the attention that acute infectious diseases garner. He continued that he had heard a lot about implementing systems, but what about backing them up? Is there a way to utilize academic collaboration networks, given the risks onsite of tsunamis, hurricanes, etc.?

The answer was that the system consisted of a secure server with mirror servers and frequent backups. But an ethical question remained in resource allocation-—in case of disaster, is it more important to keep patient treatment going, or concentrate on sites to back up to? Obviously, that decision is a crucial one, and it highlights the importance of disaster recovery plans.

Another questioner raised the issue of information needs--there is a conflicting demand between keeping things simple with aggregate data vs. needing to keep more complicated individual data (which would be useful for, among other things, tracking data on developing drug resistance).

The panel answered that keeping clinical data straightforward is a high priority. They collect 6 discrete parameters for interoperability, but in a number of countries networks for surveillance are set up, which request or require aggregate data, which can be built from the data collected through their systems. Generally, the most important outcome to track is whether the patient got better, and for how long the patient was parasite-free. These are 2 pieces of information which should be routinely collected, starting with sentinel sites.

References:

1: Wolfe BA, Mamlin BW, Biondich PG, Fraser HS, Jazayeri D, Allen C, Miranda J, Tierney WM. The OpenMRS system: collaborating toward an open source EMR for developing countries. AMIA Annu Symp Proc. 2006;:1146.

2: Fraser HS, Blaya J, Choi SS, Bonilla C, Jazayeri D. Evaluating the impact and costs of deploying an electronic medical record system to support TB treatment in Peru. AMIA Annu Symp Proc. 2006;:264-8.

3: Blaya J, Fraser HS. Development, implementation and preliminary study of a PDA-based tuberculosis result collection system. AMIA Annu Symp Proc. 2006;:41-5.

4: Choi SS, Jazayeri DG, Fraser HS. Optimizing data analysis tools to support healthcare workers in Peru. AMIA Annu Symp Proc. 2005;:923.

5: Fraser HS, Biondich P, Moodley D, Choi S, Mamlin BW, Szolovits P. Implementing electronic medical record systems in developing countries. Inform Prim Care. 2005;13(2):83-95.

6: Fraser HS, Jazayeri D, Nevil P, Karacaoglu Y, Farmer PE, Lyon E, Fawzi MK, Leandre F, Choi SS, Mukherjee JS. An information system and medical record to support HIV treatment in rural Haiti. BMJ. 2004 Nov 13;329(7475):1142-6.

7: Choi SS, Jazayeri DG, Mitnick CD, Chalco K, Bayona J, Fraser HS. Implementation and initial evaluation of a Web-based nurse order entry system for multidrug-resistant tuberculosis patients in Peru. Medinfo. 2004;11(Pt 1):202-6.

8: Szot A, Jacobson FL, Munn S, Jazayeri D, Nardell E, Harrison D, Drosten R, Ohno-Machado L, Smeaton LM, Fraser HS. Diagnostic accuracy of chest X-rays acquired using a digital camera for low-cost teleradiology. Int J Med Inform. 2004 Feb;73(1):65-73.

9: Jazayeri D, Farmer P, Nevil P, Mukherjee JS, Leandre F, Fraser HS. An Electronic Medical Record system to support HIV treatment in rural Haiti. AMIA Annu Symp Proc. 2003;:878.

10: Fraser HS, Jazayeri D, Mitnick CD, Mukherjee JS, Bayona J. Informatics tools to monitor progress and outcomes of patients with drug resistant tuberculosis in Peru.
Proc AMIA Symp. 2002;:270-4.

11: Fraser HS, Jazayeri D, Bannach L, Szolovits P, McGrath SJ. TeleMedMail: free software to facilitate telemedicine in developing countries. Medinfo. 2001;10(Pt 1):815-9.

12: Fraser HS, McGrath SJ. Information technology and telemedicine in sub-saharan Africa. BMJ. 2000 Aug 19-26;321(7259):465-6.

13: Fraser HS, Kohane IS, Long WJ. Using the technology of the World Wide Web to manage clinical information. BMJ. 1997 May 31;314(7094):1600-3.

Labels: , ,


Read more!