Canada Health Infoway:  Look IT up

Most of us make frequent use of the Internet. We may shop or bank on-line, or look up information about arthritis and arthritis medications to help make informed treatment decisions. We hardly think about the fact that it wasn't long ago that banking or filing income taxes on-line was looked at with skeptically raised eyebrows! Electronic communications and Information Technology is here to stay.

Information Technology (IT), is also referred to as Informatics. Health Informatics has become a veritable industry that covers access to reliable health information, access to tools for disease management and decision making, and for recording, transferring and accessing health records with all the software, systems and maintenance that this requires. Just thinking about the technological wizardry involved is enough to give most of us palpitations.

Much health information technology is created to provide better patient safety, better tracking of patient information, and to improve surveillance to capture both the benefits and adverse side effects of a drug treatment. But it is also designed to ease financial and capacity pressures on the health care system by reducing or eliminating paper records, capturing the birth to death record of individuals, and providing a means for patients to become more active in their own health care to lessen the demands on health care practitioners and reduce health care costs.

This sounds good, but will it work? The answer is “possibly.” On the technical side there are a variety of systems and software applications currently in use and being developed that must be able to 'talk' with each other. In addition, the thousands of physicians, nurses, clerks, clinics, hospitals and health regions that enter, manipulate, store, transmit, retrieve and use the our health information must all be on the 'same page'. But one drawback is that health care providers don't want to spend money on upgraded computer hardware and/or new software until they know it will work, won't require frequent updates, and won't be difficult and time consuming to learn to use. This last is a serious consideration because of the numbers of personnel that must become proficient.

Health information must be carefully handled to maintain privacy and confidentiality. This is true whether our health information is stored on paper or electronically. In spite of well-constructed federal and provincial privacy legislation we still see news headlines of paper health records found in hotel dumpsters or blowing down the street on a Toronto movie set. Will the situation be better with electronic records? Patients, clinicians, the public, hospitals, researchers, Research Ethics Boards (REBs), and IT departments in hospitals, clinics and health regions are all concerned about this. There are also questions about whether it's really possible to de-identify patient information, how and where health information can and should be used and what 'permissions' should be required, questions about identity theft and hacking of electronic health information systems, and about how a breach should be handled, and the associated monetary, social and personal costs associated with a breach. An IT specialist has told me that it isn't a question of if these things will happen, only when and how they will happen.

With all electronic health record systems, including Canada Health Infoway, the Canadian Government funded, not for profit organization committed to the acceleration, development and adoption of electronic health records and electronic health information systems that is currently under construction, there are practical problems that must be overcome and ethical decisions that must be made. Patient safety may well be enhanced with electronic health records, but this will happen only if all stakeholders are involved in the decision making that goes into the planning and development of the entire, colossal project. For instance, the technological specifications must meet reasonable ethical standards that all stakeholders agree to. If technology development dictates the ethics standards then we've got it backward.

Patients are key stakeholders, but to date, knowledgeable patients are not being involved. We aren't invited or encouraged to attend conferences and if a consumer does attend they may be the only one present. The perspective of the patient / consumer is different from that of a 'geek' or a network developer, and different from someone whose job in a health authority is to oversee the local operation to make sure the right information is entered in the right way, handled with confidentiality and in a timely fashion, and what breaks is fixed promptly. Our concerns and questions are quite different.

The information I have exchanged with IT specialists and techies has been eye opening for each of us, and this information exchange should be encouraged. Patients / consumers should be part of the process. Why? Consider this exchange I had with an organizer at the Canada Health Infoway conference in May. While we talked about breach of privacy and confidentiality of health information I was told that patients had to accept the risk. I responded that I agreed that risk was a given, but that it was also reasonable for the patient perspective to help determine how much and what kind of risk is acceptable. That's when the conversation ended.

The issues and questions involved with the design and implementation of a system of electronic health record keeping and transmission are of critical importance to our health and well being, our health care system and also to the success of Health Informatics. Patients are stakeholders who must be involved. Our experiential knowledge and perspective is as important as that of the technologists, IT specialists, researchers and clinicians, health policy makers, Ethics Review Boards and the governments who fund it all. After all, it's our health and our health information.

If you are involved in Information Technology, particularly in Health Informatics - or are just interested - we’d like to hear from you. Contact us at capaeditor@arthritis.ca