When patients consult healthcare providers, more often than not they reveal confidential information about themselves and their lives without hesitation – private details that even loved ones may not know – with conviction that their doctors and nurses will be able to help them with their troubles.

The ethical principle of maintaining patient confidentiality as a core duty in the field of medicine is beyond a matter of moral respect, as it acts as a pillar that is essential in the bond of trust between a healthcare provider and the individual.

However, patient confidentiality is not absolute.

There are circumstances where a breach in confidentiality is required, such as when disclosures are with consent by the patient, required by law or is intended for public interest. But what if patient data was shared for the interest of science and research, and healthcare as a whole?

Sharing patient information for better healthcare

Dr Alan Kumar was on duty in the emergency department at Community Hospital in Northwest Indiana when an elderly man walked in – having already visited two other hospitals that same day.

“He felt he wasn’t getting answers and presented here as a last hope,” said Kumar, adding that the patient’s family knew “something was wrong and they don’t know what it was.”

“My initial plan was to do a full battery of lab tests, X-ray, CT scan,” he explained. “That process would be four to six hours, and you are talking thousands of dollars.”

Instead, Kumar opened up the electronic medical record, which included the workups for the patient from other hospitals.

Within a few minutes, he was back with the patient.

The integration of information and communications technology (ICT) with science and medicine is fervently adopted these days, with four out of every five office-based physicians using electronic health records.

These systems can be used within a specific area, or extended across departments and even across clinics and hospitals, and the integrated access to information within and across providers improves interaction between all health care professionals, ultimately contributing in the provision of continuous, quality care.

“Technology is the easy part,” said Jodi Daniel, a former health IT official.

“The really challenging part is the business issues the operational issues and the trust issues with exchanging information,” she said, especially with competitive software vendors charging hospitals for sharing of patient data.

Patient data influences the development of medical research

The advent of genome-based and personalised medicine for precision diagnosis and therapy has evolved the field of medicine by leaps and bounds, but its development relies heavily on the existence of large data sets comprising of genetic and clinical data from patients.

There are approximately 20,000 genes and three billion base pairs, and a mutation of a single gene or pair holds the key for the diagnosis or treatment of a particular cancer or disease. Identifying the mutation is an overwhelming task, but the chances are higher if larger sets of data that hold the genomes of numerous patients are shared amongst researchers.

“Researchers came and took blood from us and our kids,” said Sharon Terry, who, in the mid 1990-s, discovered that her two children had a rare genetic disease known as pseudoxanthoma elasticum.

A few days later, different researchers wanted to take their bloods, too.

"We didn't understand why they weren't sharing. And we also didn't understand why they weren't working together," she says.

Such data are obtained and stored in a variety of places such as academic medical centres, disease-specific foundations, pharmaceutical companies and even the government. However, there appears to be very minimal sharing of data amongst institutions, and scientific efforts to find cures for diseases like cancer may be hampered if methods of collection, sharing and analysis of patient data are not improved.

Fortunately, several efforts to form an integrated system is underway, such as the Precision Medicine Initiative which aims to collect genetic data from one million individuals for improvement of precision medicine, but more efforts are needed to improve the ways of sharing patient data.

No doubt, it is unethical to endanger patient privacy, but as long as information exists, there are risks that it could be misused.

With health data being both a patient’s most personal asset but also essential for research, does sharing patient data outweigh risks of privacy? MIMS

Read more:
The importance of a Clinical Information System (CIS) for your clinic
Personalised medicine: Tailored to fit each person’s genes
Trusting medical professionals: The importance of respecting patient confidentiality
How to protect your patients’ medical data from visual hacking

Sources:
http://www.telegraph.co.uk/news/health/news/8344126/Patient-confidentiality-one-of-most-important-pillars-of-medicine-says-expert.html
http://ceaccp.oxfordjournals.org/content/early/2013/08/28/bjaceaccp.mkt032.full
https://www.theguardian.com/public-leaders-network/blog/2013/apr/16/share-patient-data-improve-health
https://www.wired.com/2014/11/on-sharing-your-medical-info/
https://hbr.org/2016/11/one-obstacle-to-curing-cancer-patient-data-isnt-shared
http://www.npr.org/sections/health-shots/2016/11/28/502904826/patients-increasingly-influence-the-direction-of-medical-research
http://www.marketplace.org/2016/06/20/health-care/why-its-still-difficult-hospitals-share-patient-data