Dec

29

Public Health:  What is needed and where is the trust?

One of the largest users of secondary data is public health. For those not familiar with the term, secondary data is data that was initially generated for, say, treatment purposes and later used for other purposes such as research, disease treatment effectiveness, immunization tracking, etc. Public health officials are often hungry for as much secondary data as they can get their hands on and for good reason.

Public health is an arm of government focused on addressing not only current health risks such as outbreaks of influenza but also to review and research chronic disease management effectiveness, trends in birth weight for different populations, evaluating effectiveness of preventative measures, etc. In other words, public health’s goal is to keep individuals and populations healthy now and into the future. The use of secondary data that is identifiable is, though, problematic.

Public health activities occur at all levels of government but generally most of the activity occurs at the county or local level with data often feeding up to the states and from the states to the federal government. There are significant interactions between the government and academia but the day to day business of public health occurs outside the walls housing think tanks and the rarefied research environment. In other words, much of the on-the-ground work for public health falls to local government in partnership with non-profit and often safety net organizations.

At this point in time many data exchanges are in paper form and there really are no standards for data exchange, sometimes even between counties within a state. As states and the federal government push the move to a primarily electronic exchange of health information for all legitimate health care purposes (including public health), too often public health is either left out of the discussion or not enough attention is given to the fact that to be effective and assist in improving the quality of health care (not to mention appropriate and speedy response to disasters), public health organizations need to be fully engaged in electronic exchange of health information discussions and to making sure public health is included when the tools of electronic health information exchange (HIE) are rolled out and funded.

Public health needs to be brought along not only for the reasons mentioned previously, but to also allow electronic communication of data regarding conditions, vital statistics, etc. that healthcare organizations are required to report by state and/or federal law. It would greatly benefit the whole industry (not to mention present and future patients) if public health were included as we move to that new world of electronic exchange.

In addition to providing public health with the tools necessary to communicate, research, regulate and address communicable disease outbreaks (among other things), there need to be very clear definitions regarding what secondary data can be used for, when identifiers need to be stripped from the data set before it is transmitted to a public health agency or within the public health agency and the implementation of appropriate privacy and security practices. There are varying views regarding the use of secondary data, a number of related misunderstandings regarding privacy and security and a disconnect between what the consumer/patient thinks appropriate and public health thinks appropriate when sharing data for secondary use.

This has become to some extent a debate over what should and should not be included as secondary data for public health use. Like it or not, there is an inherent mistrust of government and the past Administration has not done much to secure public trust. There is a fear on the part of consumers and advocates that their personal health information will be used for research and other projects that invade their privacy and may lead to adverse consequences to the consumer. Also, given the number of privacy and security breaches on the part of government that have appeared in the news, there is also a lack of trust in public health’s ability to appropriately protect the privacy and security of individuals’ identifiable health information. On the other hand, many public health agencies believe they should have fairly open access to identifiable health information to meet their identified mission.

There is a definite need to share identifiable health information with public health to protect the general population against communicable diseases and to assist in the event of a disaster. There also is a significant value in the secondary use of data by public health to assist in improving the lives of patients/consumers in the short and long run. The need and the benefit to consumers need to be more clearly articulated, though. “Trust me” just doesn’t work.

Public health also needs to improve standardization as it relates to the collection, sharing and use of data; consumer education; increased use of health information technology (standardized of course); clearly document and demonstrate why access is needed to identifiable health information for secondary use; and demonstrate public health agencies can adequately protect the health information with which they are entrusted.

There will, at least during the short run, remain the distrust of government. It is advisable that public health agencies at all levels of government adopt transparent practices and clearly demonstrate on a regular basis that that data public health is entrusted with and is identifiable is only used for its intended purpose. The trust needs to be earned before consumers will support more expansive use of identifiable health information by public health agencies, no matter how great the benefit to the populations and individuals those public health agencies serve.

As an example, a number of states have implemented pharmacy registries. This data can be useful in assisting with proper pain management by assisting in removing the provider fear that they are prescribing too high a level of pain medication, that the patient is really abusing the medication, which results in inadequate pain management. It can also assist in identifying trends in the abuse of prescription medication. This is a case, though, where consumers will not be sold on the benefits of a pharmacy registry (if it isn’t kept a deep dark secret) unless they are assured that they will not be targeted for prosecution by law enforcement, that they will not be tagged inappropriately as “abusers” by government and their providers and that the data that is shared is deidentified for most of what the data is used for.

Oregon is once again proposing to implement a pharmacy registry. Even I have my own set of fears and discomfort over the state having a list of the medications I may take over time. While I can see the benefit, I can also see the ease with which the privilege of accessing the data can be abused. This discomfort is personal and also comes from a healthy knowledge of state and federal privacy laws.

The preceding is just one example of where individually identifiable health information can be collected for the good of individuals and the general public and to improve the quality of health care. It is an example of where there is a fear that the data will be misused and potentially not adequately protected from privacy and security breaches. It is also an example of data use for a given purpose but with no standards developed that are mutually adopted across state lines (technical, use, minimum necessary, etc. standards).

In conclusion, public health needs to be very involved in the movement towards an expanded use of standardized HIE and HIT. That said, public health agencies have an obligation to work together to develop standards for use, disclosure, protection and so forth. Also, public health at all levels needs to re-engage the public, clearly demonstrate they are good stewards of health information and clearly demonstrate that the secondary use of data really does add value to the lives of that public public health is intended to serve.