Data Registry Development Engagement for Cancer Treatment

Dec 27, 2017

The global pharma industry comprises of companies that are engaged in researching, developing, and manufacturing drugs to improve global health outcomes. In the recent years, the drug market showed a radical decline owing to the depreciation in the USD against other foreign currencies. On the contrary, the increase in aging population, changing lifestyles, unhealthy eating habits, and increasing incidences of chronic illness are likely to spur the growth of the pharma industry, globally. Also, with the frequent change in lifestyles and the urbanization, North America is expected to account for prominent shares in the industry. In this ever-changing world, prominent organizations are focusing on innovations in a timely manner to drive change and stay ahead of the competition. Though the global pharma industry is witnessing promising growth owing to the presence of numerous competitors, the market is likely to witness several challenges, which include:

  • Strict government regulations: In this patient-centric environment, pharma companies are witnessing stringent regulations to ensure that they are in compliance with the government safety norms. In the United States, the Food and Drug Administration ensures that drugs are rigorously tested to ensure safety with minimal side effects.
  • Bio-similar slowdowns: Biosimilar drugs can offer additional treatment options while lowering the healthcare costs. However, in the pharma industry, biosimilars are not encouraged as they curtail innovation capabilities.

The Business Challenge

The total spending on medicines is forecasted to surpass $1 trillion by 2021.

A leading pharma company in the US had sponsored the development of a central registry for cancer treatment to improve clinical discussions, patient decision making, patient satisfaction, and coordination of survivorship care. Based on previous reports on the quality of care for individuals with cancer, the need for improved documentation in patient medical records, in terms of planned treatment and a summary of the actual treatment received, was needed to facilitate the transition to survivorship, specific treatment summaries, and survivorship care plans using longitudinal patient-level data.

After the post-cancer treatments, the primary care physicians (PCPs) needed to be aware of existing guidelines for the care of cancer survivors. Due to the lack of communication between oncologists and PCPs, there was insufficient information about patients’ cancer diagnoses and treatment summaries. Despite the increasing adoption of cancer treatment plans, summaries, and survivorship plans, there had been limited uptake and fewer studies on quality at the point of care. Based on the requirements, the client approached Quantzig to build this registry and provide ongoing maintenance and enhancements for further integration with other registries and data collection.

Key Implementation Activities in the Pharma Industry

To gain relative information on the cancer statistics in terms of the incidence and mortality in the pharma industry, the experts at Quantzig:

  • Developed data collection survey forms for multiple practices that were involved with the registry development
  • The practice consent process was based on participation from at least 3 oncologists and 1 member from the state’s regulatory authority
  • Survey forms such as drop downs and free text fields for oncologists and PCPs were used to enter relevant information like patient disease and treatment
  • The access to registry and survey forms was facilitated using a password protected centralized website
  • Developed a schema and data dictionary based on common medical terminologies being used by the oncologists and PCPs to ensure data standardization
  • Stored individually identifiable patient information in a separate and protected data table with access limited only to the HCPs and the local practice
  • Developed scripts for data cleansing and aggregation to provide data and quality reports to the practices for quality improvement activities
  • Reported aggregate findings regarding quality measures among participating practices
  • Developed a separate module for statistical analysis of the data
  • Summary analysis of the patient-level data was taken using practice specific quality measures; such as the percentage of patients with hormone receptor-positive disease who were offered endocrine therapy
  • Compiled the graphs / charts depicting stages of cancer progression through each stage
  • Segmented the patients based on demographics, cancer stage, and the type of cancer

Key Maintenance Activities in the Pharma Industry

The data registry experts at Quantzig:

  • Developed automated data integration scripts for ingesting data from other registries based on one to one mapping of data fields
  • Ensured minimum possible manual intervention
  • Integration scripts were manually customized if additional or dummy fields were needed
  • Provided support for the following
  • Registry administration functions
  • Maintaining and resetting passwords
  • Creating private user groups for oncologists and PCPs
  • Creating group level user access
  • Ad-hoc report requirements requiring customizations
  • Executed and updated ETL scripts in case of manual uploads
  • Tested and de-bugged in case of process disruptions
  • Expanded the registry to two other disease areas
    • Skin cancer
    • Lung cancer

To know more about how data registry helped the client in the pharma industry, speak to our analytics experts.

Key Training Activities in the Pharma Industry

The key training activities offered by Quantzig include:

  • Conducted webinars for each practice separately to ensure they were informed of all registry modules and functions.
  • Participating members were instructed to enter data for patients with breast cancer using the web-based application for testing data collection module
  • The helpdesk provided ongoing support during the maintenance phase to the main governing body and administrative staff regarding any clarifications or compliance related issues


~70% of the HCPs were satisfied with the registry, more than 50% of the HCPs used summary measures and statistical reports to improve patient outcomes, ~40% of the HCPs reported less work before appointments and decrease in duration of appointments

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