Challenges Contributing To Slow PHR Adoption

1. Technical barriers. A nuanced discussion of the reasons for the slow adoption includes issues of cost, access, and interoperability; security concerns; and data ownership. However, in our opinion, slow PHR adoption may be linked to a failure of engineering, which has led to products with limited value to the end users. The best example of this is that because health information such as financial or clinical data does not flow freely among multiple organizations, PHRs do not automatically receive data. This means that the data must often be entered manually by consumers—a time-consuming and error-prone process. For most consumers, this lack of
   safe and reliable automation makes it problematic to maintain a PHR, and a PHR that is not up to date is not useful and thus will not be used.
2. Policy barriers. Delays with federal rules and with the implementation of national policies have also contributed to the lack of PHR development and subsequent adoption. The engineering challenges were magnified by regulations that were only partially implemented and a framework for information technology (IT) that was not prepared for the dramatic changes induced by theWorldWideWeb.
3. Computer Competency, Internet Access, And Health Literacy
   Wider consumer adoption of PHRs will require attention to at least three important but non-technology-based areas: computer competency, Internet access, and health literacy. If these are not made policy priorities, PHRs risk becoming a tool that is limited to groups of peoplewho are already linked to the Internet with high health literacy and computer skills. Improving health literacy is a national priority identified in Healthy People 2010 as a key objective in improving the public’s health. The relationship between literacy and health is complex. Low health literacy
   is associated with being poor and with engaging in fewer activities that influence good health.The groups with the greatest limitations for health literacy include people older than age sixty-five; minority, immigrant, and low-income populations; and people with chronic mental or physical conditions. The skills to increase health literacy will be critical for PHR adoption by a diverse population.
   Computer competency and Internet access are necessary to facilitate information retrieval and online communication. The issue of Internet access is important because it disproportionately affects those with limited resources and limited health literacy.12Most studies that have evaluated Internet applications for health suggest that patients are ready to use these tools, and the most-anticipated Internet applications include access to information on new treatments, e-mail communication, and medication information. Some research groups also identified the importance of sharing information through social networking and the value of learning from people like themselves. If policies are to be fair for everyone, especially for populations with a history of poor Internet access, they need to focus on improving access to the Internet.
   Training for computer competency goes beyond turning a computer on and off. Competency includes understanding how to navigate theWeb and complete simple functions such as searching for information, saving information, and sending e-mail. Acquiring and mastering the skills necessary to work with online applications also become important as consumers increasingly turn to online tools and sources of health information. Another opportunity to improve Internet access is through mobile phones. It is clear that mobile phone use is much higher than Internet access in under served communities, especially among Hispanic youth. As devices become more sophisticated and application providers design mobile ready solutions, the mobile phone may also serve as an important entry point for consumers to access their PHRs. The mobile phone also introduces an important opportunity to support consumers in behavior change through direct and customized text reminders.
   For example, the financial and clinical data held by provider organizations are not well linked even within an organization. This limits the kinds of tools that could be developed for a PHR to help consumers understand their treatment options within their own health plans. In addition, major challenges associated with creating national standards for electronic transactions for health care (established by the administrative simplification provisions of the Health Insurance Portability and Accountability Act [HIPAA] of 1996) resulted in evolving and even fragmented standards. The delayed development of standards contributed to slow development cycles of PHRs, and without the benefits of standards, PHRs often functioned as islands in a vast sea of collected health data. As a result, consumers had PHR options but no PHR that did everything they needed to manage their health andwellness. Inthe future, the ideal PHR will receive health data from multiple sources of information, integrating the data that are necessary to manage health.
   

Source : Health Affairs 28, no. 2 (2009)

1. 
   

Electronic medical record systems in developing countries (4)

Implementation in the other country

(3) The HIV-EMR system, Haiti
Background: Since 1999, PIH has run a communitybased HIV treatment programme in Haiti with its sister organisation Zanmi Lasante, expanding to seven public health clinics in an area with virtually no roads, electricity or telephone service.
Design: Based on the PIH-EMR. Satellite-based internet access at each site supports email and web communication.
Sites: Seven in rural Haiti.
Number of patients: 4000; 2000 full patient records.
Data entry: Doctors enter case histories and medications directly, whereas technicians enter laboratory results and pharmacists enter stock records. The data entry staff is being expanded.
Design: Open source web system backed by an Oracle database (the same as the PIH-EMR) with an additional offline client for data entry and review. Bilingual English and French.
Functions: History, physical examination, social circumstances and treatment recorded. Decision support tools provide allergy and drug interaction warnings, and generate warning emails about low CD4 counts. An offline component of the EMR was developed to overcome unreliable internet communications in some sites. This allows data entry and case viewing when the network is down, and has proven to be reliable and popular with clinical staff.
Pharmacy management: Full inventory system and drug regimen analysis.
Significance: The HIV-EMR shows the feasibility of implementing a medical record system in remote clinics in a remote area with virtually no infrastructure and limited technical expertise.

(4) Careware, Uganda32
Background: A team at the US Department of Health and Human Services has developed a medical record system to support HIV treatment via the Careware system.
Design: Stand-alone database built with MS Access.
Sites: US: 350; Africa: Two.
Number of patients: Several hundred in Africa, many thousands in the USA.
Data entry: Both direct by users, and on paper forms.
Functions: Provides comprehensive tools for tracking HIV patients and their treatment, including clinical assessment, medications and billing data. It is widely used in health centres and hospitals in the US, and has recently been internationalised and deployed in Uganda in October 2003.
Pharmacy management: Drug inventory support in international version.
Significance: Careware is an example of a US-based stand-alone EMR that is being adapted to developing country environments. An internet-accessible version that is under development will allow local data entry offline but provide networked communications and back-up.

(5) Lilongwe EMR, Malawi13
Background: Kamuzu Central Hospital located in Lilongwe, Malawi has made extensive use of a touchscreen patient management information system for a wide range of clinical problems in the 216-bed paediatric department since 2001.
Design: Runs over a local area network built on Linux/MySQL with Visual BasicTM for the client programs.
Sites: One.
Number of patients: 160 000 total; 6000 with HIV.
Data entry: Physicians, nurses and pharmacists perform all data entry using touch screens, including medication orders.
Functions: Data are collected on patient demographics, medication, laboratory tests and X-rays. A potential limitation of the touch screen approach is that it is difficult to enter free text, though an ‘on-screen’ keyboard is available and has been used by local staff to enter all the patients’ names.
Pharmacy management: Recording of regimens only.
Significance: The extensive use of this system directly by healthcare workers in a poor country with limited IT skills is a convincing demonstration of the potential of EMRs with user-friendly data entry mechanisms.

(6) SICLOM, Brazil
Background: The Brazilian public health system uses the ‘Computerized System for the Control of Drug Logistics (SICLOM)’ to deliver ARV treatment to over 100 000 patients – by far the largest group in the developing world.
Design: Separate EMR databases on each physician’s desktop periodically connect to the central server by dial-up to update records.
Language: Portuguese.
Number of sites: Widespread throughout Brazil.
Number of patients: More than 100 000.
Function: Used to support prescribing and track medication supplies (limited information available).
Significance: It is considered a ‘key factor(s) helping to overcome logistical challenges to delivery of antiretroviral treatment in Brazil’

Other EMR systems in developing countries
FUCHIA was developed by Epicentre, the epidemiology group of Me´decins Sans Frontie`res, to support their HIV treatment projects.35 It supports clinical care and long-term follow-up of patients, including scheduling of visits; it includes data on medications and investigations and generates reports. It was developed as a standalone system using MS Access and the Delphi programming language.
An information system was developed in Botswana to support the TB programme and is built using EpiInfo (a free stand-alone program from the US Centers for Disease Control [CDC] designed for data collection and analysis in developing countries). It includes reporting and analysis tools and has been successfully deployed to multiple sites in several countries.
PDA/Palm systems
A variety of PDA-based medical information systems have been proposed or implemented for projects in developing countries on the basis that handheld devices will be easier to use and support in remote sites. Such devices would seem to provide particular benefits for community health care, being simple and relatively unobtrusive to carry around. Palm-based devices tend to be favoured due to their excellent battery life and generally lower cost. In KwaZuluNatal, South Africa, a Palm-based system allows secure access to HIV results in remote clinics. In rural India, a Pocket PC-based system has been used to store health records for community nurses visiting remote villages. Palm or Pocket PC systems can be easily set up to view pages offline from a web-based EMR, though care is required to maintain data security. Satellife is using the mobile phone network in Uganda to link PDA-based medical records to a central site. Local healthcare workers collect data on Palm PilotsTM and then connect to a local battery-powered server that connects to a central database via a mobile phone modem.
Web-based collaboration and telemedicine systems
The web allows data sharing for remote consultation, and several projects have established systems that can be used to support diagnosis and treatment decisions in remote sites with limited bandwidth. The RAFT project permits remote collaboration, case discussion and data sharing over low-bandwidth networks between Geneva University Hospitals and Bamako, Mali. The IPATH server is a web-based tool for image sharing in pathology and radiology being used in South Africa and the Pacific as well as Switzerland. Telemedmail is a secure email and web-based telemedicine system under evaluation in South Africa and Peru.

HSF Fraser, P Biondich, D Moodley et al (countinued..)