Healthcare Records Outlive What Happens To The Data Once
It is inevitable records that someone will die. Near-certainty also applies to the creation of healthcare records for every complaint or ailment that we seek treatment. The provision of quality health services is dependent on the availability of data about patients. This study examines what happens to your healthcare records after you have died.
While we focus on New Zealand’s legal system and practices, the issue is really global. Healthcare records use to kept in paper and then store in archives. The advent of on-site digital storage was next. Your records are either destroy or erase depending on how technology works. It is becoming more common to digitize healthcare records and store them in a central repository. They may kept indefinitely after the death of a person, depending on where they are locate. Do we need to be concerned?
Value Is A Question Records
The immense value of large, population-based data sets in healthcare is unbeatable. This is especially true for records that contain genomic information along with other healthcare data. This phenomenon will only grow as more information about a person’s genetics is use in clinical treatment. These posthumous data sets on healthcare could reveal a lot about heritability and diseases. It is possible to access data sets from generations of people and communities for research purposes and allow you to analyse them.
This information is valuable, especially for data storage companies and others with financial interests in the data sets. Imagine, for example, how a company could rapidly analyse millions of genomes in order to identify a disease that could potentially be treat with an engineer pharmaceutical. The commercial value this could create. How will this impact the person whose data is store and their surviving relatives? If the result is beneficial to their country and community, many people will be willing to give up medical records.
But the lines can easily blur. It would be acceptable to send data sets to foreign companies. What if they offered a free treatment to the families of those who used their data? What if the cure were half-off or full-price, and the alternative was no cure at all? This information could use by companies to make millions. There is no simple answer.
What Is The Legal Situation?
Without consent and privacy, it’s difficult to discuss the long-term fate for healthcare data. Participants must give informed consent when participating in medical research. The data gathered are often anonymised. However, access to posthumous medical records is not well protect or regulate in most countries and the laws surrounding access are extremely unclear.
A deceased person in New Zealand does not have privacy rights under the Privacy Act. Healthcare data must kept for at least 10 years after the death of the person. However, the regulatory body that then custodian may decide what purpose it can used for.
The situation is extremely vague because the custodian could be any person, from a local doctor or health board to a commercial institution that keeps health records. Many argue that anonymized data sets don’t require consent from individuals in this case, a deceased person can’t provide it anyway. Genomics is making it more difficult to define true anonymity.
Your genome is partially inherit from your relatives and family. They might also be emotionally involve in any research or action involving the genome of a family member who has died. Consent and ethics have not been well handled by the medical profession. One case that is well-known is the use of Henrietta Lacks’ cancer cells a 31 year-old American woman who died from cervical cancer in 1951 in research projects thousands of times.
Unknowingly, she made a significant contribution to global health. However, she didn’t consent and her family wasn’t consulted. There is also the possibility that large data bases may be easily available, increasing the likelihood of data linking matching data sets that may be related to the same person and potentially undermining anonymity for them and their families.
What Records Now?
New Zealand’s and Australia’s governments have acknowledged that healthcare data is a valuable resource. The possibility of commercialisation of these data is possible. Researchers and private institutions could eventually be able to access large, posthumous data sets on healthcare from these countries.
The public has to decide what is reasonable. Trust between patients and healthcare providers may be at risk if the posthumous use of healthcare data is not in line with society’s wishes, particularly its desire to anonymize. Although healthcare data sets are of immense value, the public must be informed about their use. Only then will the full potential of posthumous data sets in healthcare be fully realized.