Think of data thieves as smart as Sherlock Holmes! Understanding Statistical Disclosure and Anonymisation

Imagine, you are taking a treatment for disease X, that nobody is aware of except for you and the doctor. In due course, a research agency (owned by the hospital management) collects your private information (regarding your disease and symptoms) assuring you that your information will be safe, confidential and secure with them. However, after a few days, one stranger confronts and tells you that he is aware about your illness and tries to blackmail you.

Threatening! Right?

Health data is super sensitive. Infact, it is more sensitive data than your bank account number and the kind of data breach discussed in the example above can occur despite the highest level of cyber security measures.

How? Let’s bring in Sherlock Holmes to solve this case as the criminal may have not stolen data but may have used a similar approach to Holmes’ science of deduction. He may have deduced your details through statistical disclosure.

Let’s discuss the above peculiar case of data theft in more detail. Here is how he may have deduced:

The criminal was another patient in the hospital who had simply seen you and knew that your details were also taken. Probably, he saw you filling the researcher’s questionnaire.

In the monthly research magazine of the agency, a table was published containing details of diseases X and Y. A simple part of the table gave the count of patients as below:

X: count of patients – 50

Y: count of patients – 1

Here, the patient who deduced and misused the information was none other than the person with disease Y. By looking at the table, he immediately knew that since he is the one with disease Y, the others who filled the researcher’s questionnaire have disease X.

This deduction technique is called “Statistical disclosure by Differencing” and to deal with it we need “Anonymisation” methods.

Anonymisation is a process by which personal data is rendered as non-personal. It is different from cyber security, although equally important and also a critical area of research demanding more attention. It is based on securing data by dealing with data itself and not its storage environment. It includes encryption techniques, however, is not completely restricted to the same. It allows the researcher to analyse the data beyond traditional theft practices and presumes that the thieves come with Sherlock Holmes level of smartness!

Let us bring in an anonymization technique in the above scenario. Here, we need a particular type of anonymisation that doesn’t dilute important information for the reader when he looks at the table. If a little change in the proportion of patients doesn’t change/affect the overall take away, then a simple integer can be added at a decent/ an acceptable low count to make the information look like this –

X: count of patients – 50

Y: count of patients – 5

However, this may not work if it impacts data integrity and if actual count is important. For such instance, we may/will need some other anonymization technique.

Similarly, there are various other statistical disclosure and their respective ways of anonymisation. Therefore, the topic “statistical disclosure and anonymisation” is considered as an open area of research.

Consider another quick example of a respondent whose date of birth is 2nd Jan 1988 and the researcher needs to calculate respondent age at the end of diagnosis. But does he need the exact date of birth of respondent to calculate his age? If age is needed in years and not in days then even 5th Feb 1988 would give his age as 33 years as of Aug 2021. As date of birth is sensitive information that we want to avoid sharing, why not share a strategically manipulated date which doesn’t impact the results.

The sensitivity of data in the health industry puts a higher responsibility on data security professionals. This is why health research experts are mostly third-party professionals and different from data collection agencies. This is mainly to avoid the risk of statistical disclosure. Lately, researchers have understood the importance of anonymisation and therefore, the central authorities for Health management are creating safe havens for storing data from where data for research can be taken/accessible. Here, in addition to top-class cyber security, the data also undergoes stringent anonymisation processes to avoid data misuse.

Author: Kunal Hriday

Reference:

Mark Elliot. (2021) Anonymisation: theory and practice. National Centre for Research Methods online learning resource.

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Judit Banhazi

Specialty
Value and Access

Role
Vice President

Degree
MD Medicine, JD Law

Judit Banhazi

MD Medicine, JD Law

Judit Banhazi, based in Basel, Switzerland, brings over 20 years of experience in HEOR, Market Access, and Health Policy.
She has led HEOR strategies in hematology and initiated EU HTA policy activities. Judit began her career as a physician and has worked at prime global pharma companies. Her academic prowess is excellent with a peculiar combination of an MD in Medicine and a JD in Law, she has been at forefront of health economics by being involved in HTA policy discussions with EFPIA and HTAi.
Known for her collaborative spirit and practical approach, Judit is passionate about learning and delivering quality work. Outside of work, she enjoys spending time with family and friends, travelling, and running.

Adam Ball

Specialty
Business Development Manager

 

Adam Ball

Business Manager

I am delighted to be part of the team here at ConnectHEOR. To tell you a bit about me, I have 10 years experience within Talent Acquisition within HEOR, RWE and Market Access. I have built a global network during this time and am excited to utilize this to help us grow as business. 

 

Outside of work I love sports, playing football and squash regularly, as well as going to the gym. I also enjoy watching sports mainly football and tennis. I have a new born daughter too so she is taking up a lot of my time and is a bundle of joy. I also play drums and like to think I have a broad taste in Music.

 

Eleni Tente

Specialty
Medical writing, Evidence planning

Role
Consultant, Medical writer

Degree
PhD – Molecular biology and genetics

Eleni Tente

PhD – Molecular biology and genetics

Eleni Tente is an experienced medical writer with proven ability to translate complex scientific information into clear, concise, and impactful content to diverse audiences. She has a strong background in integrated evidence planning, publications, internal communications and e-learning development, complemented by an understanding of various therapeutic areas.

Eleni holds a PhD in molecular biology and genetics from the University of Cambridge and an MSc in plant genetic manipulation from the University of Nottingham.

In her free time, Eleni enjoys diving into a good book, fishing along the coast, or planning her next thrilling scuba diving adventure to swim with sharks.

Syed Salleh

Specialty
HTA Modelling and Discrete-event Simulation

Role
Consultant, Modeling & Analytics

Degree
PhD – Health & Related Research

Syed Salleh

PhD. Health & Related Research

Syed Salleh brings extensive experience in HTA modeling, having successfully led the development of both de novo and adaptation models for HTA listings across multiple countries, including Malaysia, Philippines, and the UK. His work spans key therapeutic franchises such as oncology, cardiometabolic, and respiratory. Syed has also delivered critical insights to healthcare professionals through MYSPOR, ITTP, and IKN virtual CME events and numerous publications.

He holds a PhD in Health and Related Research from the School of Health and Related Research (ScHARR) at the University of Sheffield, UK, with a specialization in HTA and operational research, specifically in discrete-event simulation (DES) technique.

During his time in a leading pharmaceutical company, Syed played a key role in securing the listing of several key products in the Malaysia Ministry of Health Formulary and served as the primary contact for DES-related projects.

Besides work, Syed enjoys traveling, listening to music, and spending quality time with his family.

Thai-Son Tong

Specialty
Model Conceptualization and Data Analytics

Role
Senior Consultant

Degree
PhD – Health Economics

Thai-Son Tong

PhD. Health Economics

Thaison Tong has extensive work experience in health economics, decision modelling and big data analysis. He has a unique mix of experience in HEOR and RWE related research in academia and pharmaceutical industry. His expertise lies in health technology assessments (HTA), health economic modelling, simulation modelling, big data analytics and decision analysis. He has hands-on experience in a range of software and programming languages including R, R Shiny, R Markdown, Python, MS Excel, VBA, and Simul8. He has substantial experience of the health care system in the UK and other European countries.

Thaison has direct experience in building cost-effectiveness models from scratch and conducting big data analysis in several disease areas including dementia, vascular disease, and cancer.

Thaison’s PhD focus was to develop a de novo patient level model for the evaluation of different cognitive screening tests for early detection of dementia and mild cognitive impairment in primary care. He also looked at different methods for conducting economic evaluation in health care taking a broader/societal perspective. In addition, he investigated the use of Multiple Criteria Decision Analysis (MCDA) for economic evaluation.

Thaison also holds Academic Researcher position in School of Health and Related Research (ScHARR), University of Sheffield, UK and Honorary Researcher position in University of Bristol, UK.

Thaison’s likes to meditate, and play badminton, basketball and tennis.

Shilpi Swami

Specialty
Consulting and strategy

Role
Vice President

Degree
MSc. International Economics

Shilpi Swami

MSc. International Economics

Shilpi Swami is a seasoned Health Economics and Outcomes Research (HEOR) expert with experience spanning across multiple healthcare systems and therapy areas. At her current role of Vice President, HTA and Strategy, ConnectHEOR, she provides technical and strategic leadership. Additionally, Shilpi serves as the Member Engagement Co-Chair at ISPOR Oncology Special Interest Group.

Shilpi has a comprehensive track record of leading HTA submissions and devising market access strategies on a global scale, including the EU-5, Canada, US, Latin America, Australia, and Asia. Shilpi has worked across various sectors within health economics, including academia, consulting, and biopharma. This multidimensional experience equips her with a unique ability to offer strategic insights from various stakeholders’ perspectives.

Formerly a Research Fellow at the University of York, Shilpi has made significant contributions to public health projects and the development of best practices in the academic side of health economics. In her professional endeavors, she remains dedicated to improving healthcare through data-driven insights and evidence-based research

Hugo Pedder

Specialty Statistical Analysis and Evidence Synthesis

Role Senior Consultant

Degree PhD – Statistical Modelling

Hugo Pedder

PhD – Statistical Modelling

Hugo brings in a wealth of experience to ConnectHEOR from his extensive work in academia, focusing primarily on evidence synthesis and meta-analysis. Hugo holds PhD in Statistical Modelling from University of Briston and MSc in Medical Statistics from the London School of Hygiene and Tropical Medicine, and his background in neuroscience remains a passionate interest. Alongside working with ConnectHEOR, Hugo continues to part of NICE committee. His expertise includes advanced indirect treatment comparisons technique and has extensive experience of working with the NICE in UK. 

Beyond professional endeavors, Hugo is an enthusiastic outdoor adventurer, particularly enjoying mountain activities, climbing and ski mountaineering. From building rafts to exploring rivers in north of Sweden, he has lived an adventurous life outside of work and plans to continue to do so.

Kunal Hriday

Specialty
Data science and Strategy

Role
Senior Consultant

Degree
MSc. Quantitative Economics

Kunal Hriday

MSc. Quantitative Economics

Kunal Hriday is a business strategy and data science professional with experience in helping organizations crack through notorious business challenges. Kunal is proficient in business analytics, data analytics, product lifecycle management and business development. Working as a Data analytics consultant he has spent time in problem solving across variety of industries including Banking, logistics and Health and is now fully dedicated to HEOR. Kunal has hands on experience in various statistical programming tools and languages like R, Python, SAS, Excel VBA, Data Robot and data visualization tools like Power BI, Tableau and SAS VA.

Kunal also holds a Masters in Quantitative Economics from Indian Statistical Institute and a bachelors degree in Business Economics. Excellent in business communication, he is passionate about studying environmental economics and related theories of welfare optimization.

Raju Gautam

Specialty
Evidence Review

Role
Principal Consultant

Degree
PhD (Pharmacy)

Raju Gautam

PhD Pharmacy

Raju Gautam spearheads evidence review at ConnectHEOR and  has extensive work experience in evidence review and synthesis, value communications, scientific publications, medical writing and project management.
His expertise lies in systematic and targeted literature reviews, meta-analyses, network meta-analyses, value communications (AMCP and Global Value Dossiers), RWE study design and publications (manuscripts, posters, and abstracts).
He has experience working in Global pharma companies, consulting and CRO environment for several therapy areas including Cardiovascular, Oncology, Neurology, Respiratory, Ophthalmic, Rare Diseases, and Vaccines. He has more than 40 publications in international journals as an author.
Raju also likes jogging, yoga and meditation.

Radha Sharma

Specialty:
Patient preference research, survey, In-depth interviews, COA, Evidence review and conceptualisation of study

Role:
Director – Patient-Centered Outcomes Research

Degree:
MBBS (Bachelor of Medicine and Bachelor of Surgery), PhD (Global Public Health) – University of York

Radha Sharma

PhD (Global Public Health)

Radha Sharma spearheads Patient-Centered Outcomes Research at ConnectHEOR. She has a background in medicine, public health, and epidemiology.

Her expertise includes global health research, preference elicitation, mixed-method studies, consensus workshops, qualitative health research, epidemiological analysis of big data sets, RWE study design, scientific writing, and literature reviews. Her primary focus is integrating patient perspectives into all stages of health technology assessment (HTA) and healthcare decision-making processes.

Her extensive expertise in mixed-method studies and active patient/stakeholder engagement ensures that her research is methodologically rigorous and patient-centric. Radha is an avid hiker and enjoys exploring the beautiful Canadian Rockies.

Kate Ren

Specialty
Statistical Analysis and Evidence Synthesis

Role
Director of Statistics

Degree
Ph.D Probability and Statistics

Kate Ren

PhD Probability and Statistics

Kate spearheads Statistics and Evidence Synthesis at ConnectHEOR. She has more than 10 years of experience in conducting statistical analysis in HTA. Kate has PhD in Probability and Statistics specialising in Bayesian methods in clinical trial design.

She specializes in Bayesian methods in health economics and the elicitation of experts’ beliefs and has extensive experience of conducting evidence synthesis, including, meta-analysis, network meta-analysis, MAIC, STC, ML-NMR etc. Besides working with ConnectHEOR, she is also a part of NICE Committee and University of Sheffield.

Tushar Srivastava

Specialty
Decision Modelling and AI Initiatives

Role
Director and Principal Consultant

Degree
MSc – Statistics and Computing

Tushar Srivastava

MSc – Statistics and Computing

Endorsed as a ‘Global Talent’ by prestigious ‘The Royal Society, UK’, Tushar is dynamic and enjoys approaching complex problems with a holistic approach. He also holds an MSc. in Statistics and has authored a handbook on higher Mathematics, “A concise handbook of vector space theory and field theory, Srivastava T.”

In ConnectHEOR, Tushar spearhead all HEOR activities.

Tushar’s technical expertise lies in different techniques including cost-effectiveness modelling, budget impact modelling, simulation modelling, statistical modelling and indirect comparisons analysis. He brings a unique blend of academic research, technical modelling and statistical skills and industry professionalism to support the life science industry at every stage of the product life cycle. He has a good experience in statistical analyses, including survival analysis and health related quality of life data analysis from clinical trials.

Besides work, Tushar enjoys playing badminton, jogging, and meditating.