Systematic and timely sharing of health data promises to provide multifarious benefits: from improving diagnoses and treatment management to reducing costs and accelerating drug production.
The Data Economy Lab conceptualizes stewardship as a broader paradigm that pushes the envelope of data governance beyond matters of compliance. Through stewardship, we can envisage new ways to prioritize and embed individual and collective forms of empowerment, agency, and participation in the data economy.
From our research, we have outstanding questions about how to create and build trust in, data cooperatives –on issues such as the transparency and legibility of the system, particularly any automation involved, and of course, the time and financial costs of setting up and sustaining such a structure.
On July 23, 2021, the National Health Authority (NHA) released a Consultation Paper on the Unified Health Interface (UHI) to invite public comments on the design and functionality of the UHI. The objective of creating a UHI is to provide a foundational technical layer for the various Building Blocks within the National Digital Health Mission (NDHM).
The Data Governance Deep-Dives aims at broadening a discussion around data stewardship. The sixth session of the Data Governance Deep-Dives explored issues around data governance in the agricultural sector.
The Data Governance Deep-Dives concerns alternative data governance and models for data stewardship. Our fifth session was structured as a ‘Community meet’ and featured presentations by three organizations.
Data stewardship seeks to address this imbalance by distributing the power to control data and the value derived from it amongst individuals and communities.
Recent years have seen experimentation around new approaches to data stewardship to rebalance the power between people and corporations in the data economy.
Aapti's response to the Union Government released consultation paper on India Digital Ecosystem of Agriculture (IDEA) for digitizing agriculture sector.
To understand the landscape of, and consequently present evidence around non-personal data sharing and governance - particularly for India.
The report hopes to encourage data sharing between businesses and governments, with the objective of promoting innovation in the economy.
The article discusses how data stewards helps users and communities control, manage and monetise their data, and the way forward for their development.
One of the biggest ill-effects of confusion on IP for databases is possible disincentivization of database creation. Community ownership and exceptions for research and academia are important questions to factor in the discourse on database protections, and it is important to have regulatory clarity on ownership of non-personal data before mandating government access. If left unresolved, the encompassing uncertainty is likely to harm the data economy. This piece looks at national and international perspectives on how to incentivize database creation.
Health data regulation is at a pivotal point in India – there has been a steadily increasing regulatory initiative around the subject, in terms of data protection in health as well as attempts to make health data available for research and shared benefit. A number of regulations are now in varying stages of maturity, but do not necessarily add up to a coherent approach.
Aapti’s research, alongside that conducted by ODI and Mozilla, has demonstrated the virtues of an alternative paradigm for data governance whose benefits can accrue to all stakeholders in the ecosystem - individuals, communities, private entities, and the public at large.
Accelerated by the pandemic, civil society organisations (CSOs) are increasingly capturing data or partnering with other entities to unlock relevant information for societal benefit.
This deep dive was an attempt at understanding data unions and how they are operationalised through specific organisational models.
The discussion was centered on how data cooperative structures can enable data sharing, especially in the energy sector. Key insights from research conducted by an energy data cooperative were shared. The goal was to create a model for energy co-operatives that could enable value creation from the data they hold and formulate a mechanism for this value to be returned to communities.
The report makes communities the owners of NPD, with a community being defined as “any group of people that are bound by common interests and purposes, and involved in social and/or economic interactions.
Providing feedback on the second draft of the Report by the Committee of Experts on Non-Personal Data Governance Framework (hereafter, “the Report” or “report”). The process of consultation is a welcome one, and we hope that this spirit of transparency and due process is continued in the framing of future reports, policies by the Ministry.
The October 2020 session was the first instalment of Data Governance Deep Dives, and was joined by a founder from a health data cooperative who shared the organisation’s journey, learnings along the way, and questions that remain to be answered. In the informal discussion that followed, questions were raised around commodification of data, design choices for incentivisation, and ethical considerations to protect the interests and prevent oversight of marginalised communities as we build stewardship models. This series aims to uncover the realities of alternative models of data governance, and what it takes to give power and decision-making back in the hands of the people.
A summary of Aditi Ramesh's paper on the application of data stewardship towards the benefit of India's migrant labour population.
Data has emerged as a tool to surface challenges that women and gender minorities face in navigating cities however, it remains limited in its collection. Where accessible, stakeholders are either unavailable to derive value from it or it fails to be safeguarded, potentially magnifying existing, often gendered, privacy risks. The paper outlines existing approaches to data collection and sharing for women's safety and proposes principles for a data steward to guide the responsible collection and management of data for safer cities.
Amidst a data economy that centers almost entirely around user-data - how much agency does an individual really hold? This piece explores current power structures in the data economy - from users’ relationship with data controllers, the opacity and the imbalances to related implications for both individuals and communities. Finally, we consider how this power can be redistributed, and whether data stewardship can fulfill a sizeable piece of the ‘equitable data governance’ puzzle.
This piece explores the role of the community in governing data that pertains to it, specifically in the context of migrant groups in urban India.
A summary piece capturing the premises and thinking behind data sharing initiatives public good and the policy tools governing them, based on our longer paper on the subject.
Read Aapti's comments on the Report of the Committee on Non Personal Data.
Trust and fiduciary frameworks have emerged as a popular approach to data governance. This paper looks at the opportunities and challenges presented by this approach.
Aapti's formal submission to the Ministry of Health and Family Welfare on the National Digital Health Mission's Data Management Policy, filed in September 2020.
This article follows “The role of data stewards in enhancing accountability”, to chart an imagination of standards for accountability in data stewardship.
This article is the third in a series and forms a core area of research models from four cities (London, Seattle, Los Angeles and Barcelona) were selected and analyzed to understand how data sharing in cities is currently carried out.
from four cities (London, Seattle, Los Angeles and Barcelona) were selected and analyzed to understand how data sharing in mobility is currently carried out.
With the right structure and mechanisms, data sharing between the public, private sector and civil society can build trust, enable collaboration and lead to mutually beneficial outcomes.
On the 5th & 6th of August, Aapti Institute hosted our first edition of Data Deliberations, a series of roundtable discussions where we invited experts to explore existing and new approaches to sharing data. We've been thinking about responsible data stewardship - how the value of data can be unlocked, distributed, and used in the public interest.
With emphasis increasingly being placed on data-driven decision making, data stewardship is gaining pace as a mechanism to unlock the potential benefits of data while safeguarding the rights of people. Given this aspiration of a more balanced, democratic mechanism for data governance, accountability is often identified as a key principle for data stewards. While accountability may be universally acknowledged as desirable, it is often difficult to define and implies different ideals based on context.
The world of data does not have many worthy examples of ethical data sharing and is occupied largely by data brokers—companies that collect, buy (like a credit card company), and extract information about users from the internet and other sources to profit off of individual data. These brokers thrive in the digital economy which is fundamentally structured to be extractive. In the digital ecosystem, data is gathered, organized, and exchanged by a network to derive value from accumulated information.
We argue that a steward’s revenue-generating structure is intricately linked to its function of safe, responsible sharing of data and the ways in which it imagines its relationship with individuals and communities. In thinking about “real-world applications” of stewardship, we root our analysis in the following theoretical framings that help understand how data and the relationships around it are imagined.
The paper studies the reasons for, and modes of, data sharing, and aims to synthesize an initial set of guiding principles for data stewardship. The legal and governance instruments that operationalize data sharing throw into relief the limits and methods of organizing data sharing and management. It undertakes a study of (i) different philosophical bases for data sharing; and (ii) laws, policies, and standards that support them. The analysis and summation of the policies seek to capture the thrust of their intent and supporting legislation.
As data becomes more and more ubiquitous, it is undeniable that there is a need to unlock the value of data by sharing, such that it is released from the monopolies of big technology companies, and used to empower individuals and address societal problems. It is, therefore, time to build systems and processes that allow for easy and safe data sharing in ways that enable innovation without compromising individual rights and security and to derive public good.
While the PDPB chiefly deals with the regulation of personal data, it nonetheless makes limited mention of Non-Personal Data in the context of mandatory data sharing and anonymized data. Data stewardship takes a more important role in the context of Non-Personal Data, as they no longer exist the same kind of privacy concerns in connection with this kind of data, and as well because of the higher financial value attached to larger datasets that take the nature of Non-Personal Data.
The management and sharing of data is a crucial function for individuals, companies, and users for a variety of purposes. Financial services, government services, and other utilities such as schools all collect information from users and employees. This data may also be shared with third parties for processing for further purposes, such as analytics or authentication. When this data is shared, however, persons sharing the data lose control over the purpose of usage of this data
Amidst the devastation and complexity of the global pandemic, some encouraging indicators are emerging. In the arena of international cooperation, several countries have engaged in active medical diplomacy. India has sent medicines to the neighbouring countries of Bhutan, Bangladesh and Nepal; Cuba has continued its tradition of medical diplomacy by sending doctors and nurses to Italy; and Russia has sent medics and cargo to Italy as part of its “from Russia with love” strategy.
address intractable challenges and simultaneously advance public policy goals. Municipalities and transit agencies, in particular, are starting to recognize the benefits of using mobility data to shape dynamic and responsive transport management.
The metric for assessment of market power and dominance has traditionally been purely economic, in terms of market share and revenue.
Today, it is unimaginable to arrive at a train station or airport without checking the status of the train or the flight that we plan to board. The ability to “track” a taxi in applications such as Uber and Ola, is a major reason for their massive adoption in spite of them being an expensive option.
A large portion of digital exhaust constitutes non-personally identifiable information (non-PII), or data that does not reveal personal information. Non-PII may be best managed and used to generate societal good through models of data stewardship. At Aapti, our research explores the complexities of regulating non-PII and makes a case for stewardship, a mechanism to use data to generate value while safeguarding individual rights, as a possible solution.