Digital registries to improve health outcome

FOR YEARS, we have been hearing of the inability of the Government and researchers to get adequate information on cancer in Jamaica.

Sure, a registry exists, but the information it contains is apparently only for Kingston and St Andrew. That, obviously, cannot be a sufficient representation of the reality in Jamaica.

With the ever-increasing incidence of non-communicable diseases, including cancer, accurate data is important for the Government and others to determine the best interventions, especially given the limited resources that exist in the health sector.

One of the main challenges that we face in an environment of mostly paper is the inability to link information quickly and share it efficiently and in a timely manner. Digitisation solves this issue and allows disparate data to be placed in a central point for complete analysis, which can facilitate more informed decision making and subsequent action.

Health technology, through various modules, can facilitate the development of several health databases, and could certainly help the Government to quicken the pace in developing a cancer registry for the island.

The information provided in a health information management system (HIMS) is comprehensive because of the availability of data from several modules included in the system. So, for example, a patient’s electronic medical records (EMR) would include data from pharmacy, lab, radiology, doctor’s visit, inpatient and outpatient hospital visits, nurses notes, remote care devices, telemedicine interactions, and more.

This means that the ability to create several different data sets is endless. It can facilitate countless disease registries with emphasis on those which need priority attention, such as cancer, in our case.

Digital registries have become important tools for fighting, researching, and better understanding diseases. Several calls have been made internationally for an increase in the adoption of these, especially for diseases that are rare and not fully understood.

Much of the information for the registry will be taken from the patient’s EMR, which will capture data such as diagnosis, history of symptoms, treatment, and outcomes including, as is sometimes the case with cancer, relapse and reoccurrence information.

Some disease registries can also incorporate patient interaction tools allowing patients diagnosed with the illness to communicate within the registry and share personal experience and get support from others in a similar position. They can also have the opportunity to speak directly with persons who are researching the respective disease. This is good for research, drug development, as well as the development of more extensive treatment and care protocols borne out of actual first-hand knowledge and experience.

BENEFITS OF A REGISTRY

A national disease registry, for example, focusing on cancer, has several benefits. I know that there is at least the recognition that we cannot comprehensively tackle the problem of the increasing incidence of cancer without first having a proper handle on the extent of the cases, the circumstances of their development, geographic areas most affected, and who is really most affected.

This is why the Ministry of Health has been seeking to develop an islandwide cancer registry. Such a registry would have enormous benefits, if incorporated into a digitised health environment, including the ability to:

Monitor trends and health outcomes which can focus on actual patient needs. Identify specific areas that

IImay need to be prioritised as well as problems that may need immediate attention. Determine resource allocation priorities and needs.

Put together a comprehensive treatment and care protocol that would benefit all areas. For example, currently our health regions are divided into four. A more efficient response would consider the needs of all four rather than having each region decide independently what their own priorities may be without seeing the complete picture.

Provide patients with better access to information and resources to aid in their treatment and recovery. There is so much we can achieve with health technology, especially if we take a holistic approach. In this way, a patient’s EMR, for example, would include public and private interactions.

The technology is already in use and the University Hospital of the West Indies is poised and ready to be a repository of digital health information since it has already implemented its HIMS.

IIIDoug Halsall is the chairman and CEO, Advanced Integrated Systems. doug.halsall@gmail.com

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