Research

Health insurance administrative data, which is typically generated by health systems for administrative purposes, has enormous potential beyond its primary function. However, these data are only a proxy for the real clinical story of the patient. Our research group is exploring the myriad ways in which this treasure trove of information can be used for a variety of scientific purposes. Our efforts are directed toward uncovering ways to cleanse data of errors, normalize and standardize it for the purpose of comparing interventions and making factual meaning from a clinical perspective. However, by far the most significant effort we are making with these data is to anonymize them to ensure the privacy of individuals.

Anonymized administrative data is a rich source of information that includes details on patient demographics, medical procedures, diagnoses, prescriptions, and costs. Using this data allows us to gain a comprehensive view of healthcare delivery and patient outcomes. Our research group is adept at navigating these complex data sets and extracting meaningful insights from them.

One of our main goals is to support healthcare research by using administrative data. We investigate trends in health care utilization, availability and utilization of resources, monitor disease prevalence, and study the effectiveness of various treatments. By analysing these data, we can provide evidence-based recommendations for healthcare policies and practices. Understanding disparities in health care access and outcomes is essential to achieving health equity. Our group uses advanced statistical techniques to identify disparities by defined cohorts of patients, such as by age or region, allowing policymakers to perceive and potentially address these disparities.

In today’s data-dependent healthcare environment, protecting sensitive patient information is critical. Our team of experts is at the forefront of developing cutting-edge methods and guidelines for anonymizing medical data so that we can responsibly address the critical need for privacy to enable research and analysis of this data. This effort is not just a professional mission, but a moral obligation based on our belief in the importance of protecting individuals’ health information.

Why we need to anonymize data:

Privacy: patients trust healthcare providers with their most intimate information. Anonymization ensures that this sensitive information remains confidential and patients are protected from potential identity theft, discrimination, and other invasions of privacy.

Supporting research: medical research relies heavily on access to diverse and complex datasets. Anonymisation allows researchers to access this data without compromising patient privacy, facilitating the development of innovative treatments, process optimisation and medical technologies.

Compliance: Anonymisation is not just a choice, it is a legal requirement. Rules like the General Data Protection Regulation (GDPR) or the Health Insurance Portability and Accountability Act (HIPAA) in the US require de-identification of patient data before it can be shared or used for research.

Challenges we face:

Our team recognizes that anonymizing medical data is a complex and multifaceted task that presents several challenges:

Usefulness of data vs. privacy: paragraph 4 of the GDPR states, “The processing of personal data should serve people. The right to data protection is not an absolute right; it must be considered in the context of its function in society and, in accordance with the principle of proportionality, must be balanced with other fundamental rights.” Finding the right balance between the usefulness of data and privacy is a constant challenge. Such a balanced view is also entirely consistent with the provisions in the GDPR.  Excessive anonymisation can devalue data for research, while insufficient anonymisation risks revealing patients’ identities.

Changing threats: as technology evolves, the methods used to de-anonymise data are changing. Our team must constantly adapt and develop more robust techniques to counter potential threats.

Interoperability: Healthcare data is often scattered across different systems and formats. Developing anonymization methods that can be uniformly applied to these disparate data sets is a significant challenge.

Ethical considerations: Anonymisation is not only a technical problem; it also involves ethical considerations. We need to decide which information is necessary for research while respecting individual rights and privacy.

We strive for excellence:

Despite these challenges, we are committed to advancing the field of medical data anonymisation. We are improving and refining our methods and guidelines. We are committed to staying at the forefront of technological developments and ethical considerations to ensure that medical data anonymization continues to play a key role in the healthcare ecosystem, contributing to a safer and more ethically responsible healthcare system for all.

The journey of a cancer patient is marked by a series of critical steps and decisions that play a pivotal role in their overall prognosis and quality of life. Cancer, regardless of its type or location, carries a significant burden due to its impact on physical and emotional well-being. Here, we outline the typical journey of a patient diagnosed with cancer and emphasize the importance of early detection and personalized treatment.

1. Diagnosis: Cancer can affect various parts of the body and can manifest in different ways. Timely diagnosis is crucial for effective treatment and improved outcomes. Many patients may experience vague symptoms, while others may be asymptomatic until the disease reaches an advanced stage. Early detection through routine screenings, recognizing unusual symptoms, or risk assessments is essential.

2. Medical Evaluation: Upon suspicion of cancer, patients undergo a series of medical tests and evaluations. These may include imaging studies, such as CT scans, MRIs, and biopsies, to determine the type, size, and extent of the tumor. A histopathological examination of tissue samples is necessary for confirming the diagnosis.

3. Treatment Planning: The treatment plan for cancer varies based on several factors, including the type of cancer, its stage, tumor size, and the patient’s overall health. The primary goal is to tailor the treatment to the individual’s unique circumstances.

4. Treatment Options: The treatment approach may encompass the following options:

Surgery: Surgical removal of the tumor is the primary curative option for localized cancers.

Chemotherapy: Chemotherapy may be recommended to destroy cancer cells, both before and after surgery, or as a palliative measure for advanced cases.

Radiation Therapy: Radiation therapy targets cancer cells with high-energy rays to shrink tumors or alleviate symptoms.

Targeted Therapy and Immunotherapy: In some cases, targeted therapies and immunotherapies may be considered, depending on the specific characteristics of the tumor.

5. Ongoing Care and Monitoring: After treatment, patients require ongoing follow-up care to monitor their progress, manage potential side effects or complications, and detect any signs of recurrence. Regular imaging scans, blood tests, and consultations with oncologists are vital in this phase.

6. Support and Well-being: Supportive care is essential for the well-being of cancer patients. This includes pain management, nutritional counseling, and emotional support. Support groups, palliative care, and access to psychological counseling can greatly improve their quality of life.

Understanding the unique challenges faced by cancer patients is crucial for improving diagnosis and treatment. Our dedicated team collaborates with healthcare professionals and patient organizations to study the entire journey of cancer patients and define its bottlenecks and inefficiencies. Our goal is to gain insights into these challenges and continuously enhance the timely diagnosis and personalized care for all cancer types.

Real-world data-based example of a patient journey to treatment of pancreatic cancer:

IM_HP – imaging and histopathological examination
MDS – multidisciplinary team
CTX – chemotherapy
CENSOR – censored
SX – surgery
DEATH – death of the patient
RT – radiotherapy