#4 Reimagining Cancer Care

In the last few months, I have had the opportunity to work closely with the National Cancer Grid – a network of 150+ cancer centres in India – and in the process, better understand the workflows involved in different medical processes and the requirements of medical professionals. I have closely observed care delivery, interviewed cancer patients and oncologists, learnt about current challenges and about initiatives being undertaken by NCG and other organisations to tackle them.

This blog post is an evolved version of an earlier post, where I had talked about the use cases of health data and the implementation of a PHR (Personal Health Record). Of these, I believe that the biggest use of health data will be in improving the quality of care in complex medical cases (either acute like surgical procedures, or chronic like cancer). In this post, I will use cancer care to exemplify this.

Core idea
Let us visualise a specific application for cancer care, with oncologists as its primary users. There are only around 1000 trained oncologists in India, so let’s assume that all of them are users of this application. Let us also assume that clinical data of all patients treated by these oncologists is conveniently accessible through this application (with due privacy and security measures). What will these users do now?

Expert consultation
I attended a Virtual Tumour Board run by the National Cancer Grid – a weekly remote consultation program run on Saturday mornings where teams of doctors voluntarily join to discuss well-documented cases and their potential treatment plans. VTBs are run separately for each speciality (like head & neck tumour, gynaecology, neurology, etc.), which means that it takes up to 4-6 weeks for one’s turn. Doctors usually do not have the luxury of such long waiting periods, and therefore turn to individual consultations which are often not documented, depend on informal connects and are sometimes made with incomplete data. Formalising this process and making it asynchronous can be of huge benefit to all medical professionals.

Care team collaboration

Complex medical procedures often involve a team of doctors and other medical professionals, working responsibly for a given patient. A significant percentage of all deaths due to medical negligence is caused by lack of communication between the care team members. The communication process today is paper-based and unstructured, leading to accidents that can, in fact, be prevented – especially with the growing use of IoT devices and voice-based inputs. (I saw one such application at Narayana Health being used by their ICU teams).

Performance evaluation

Lack of organised data, changing patient care-providers and long feedback loops make it difficult for medical professionals to monitor their performance. Can we empower them with tools to do so? Doctors today lack visibility on the outcome of the treatment given and rely on intuition, experience or techniques tested in developed countries for care delivery. Such a tool would not only help doctors improve their performance, but also improve the trust equation with their patients.

User Experience
There are three crucial elements for enabling a good user experience:

Data input – Most EHR systems require text input to be typed in by doctors. This makes it difficult to use. Other input techniques for automated data transcription like touch, voice, or other innovative methods for data capture will need to be explored. Additionally, interoperability across all systems and devices will be key in enabling access to all data.

Data interpretation – Sorting through a patient’s health records takes up a substantial amount of time of a physician, especially when the data is unstructured. Developing intelligence to sort the relevant records as per the case in question will significantly enhance the user experience of the product.

Safety and PrivacyAll solutions should ensure complete privacy of patients. This could mean access controls, electronic consent, digital signatures, digital logs, tools for data anonymisation, etc. it might also be important to perform basic verification of users of the platform.

Value Discovery
The value of the platform will increase as more and more physicians become a part of it. For example, an endocrinologist might need to consult a cardiologist in a case of disease progression, or an ENT specialist might need to consult an oncologist to confirm a diagnosis. More importantly, the platform will also drive innovation, i.e., other use cases can be developed on top of it. For example, the expert opinions mentioned above can also be used for consulting patient remotely, pre-authorising claims, forming medical peer review groups, etc. Similarly, working care groups can also simultaneously enrol staff for upskilling (as practised today in an offline setting), and information about treatment outcomes can help guide better research.

Next steps
We remain on a quest to find use-cases for PHR since we believe technology pilots alone would not be enough to drive its adoption. In that context, we are looking for partners to experiment with this in different healthcare domains. If you are interested, please reach out to me at [email protected]!

#3 What does the Health Stack mean for you?

The National Health Stack is a set of foundational building blocks which will be built as shared digital infrastructure, usable by both public sector and private sector players. In our third post on the Health Stack (the first two can be found here and here), we explain how it can be leveraged to build solutions that benefit different stakeholders in the ecosystem.

Healthcare Providers

  • Faster settlement of claims: Especially in cases of social insurance schemes, delay in settlement of claims causes significant cash-flow issues for healthcare providers, impacting their day-to-day operations. The claims and coverage platform of the health stack is meant to alleviate this problem through better fraud detection and faster adjudication of claims by insurers.
  • Easier empanelment: The role of facility and provider registry is to act as verified sources of truth for different purposes. This means a convenient, one-step process for providers when empanelling for different insurance schemes or providers.
  • Quality of care: The use of personal health records can enable better clinical decision making, remote caregiving and second opinions for both patients and medical professionals.


  • Faster and cheaper settlement of claims: claims and coverage platform, as described above
  • Easier empanelment of healthcare providers: registries, as described above
  • Diverse insurance policies: In addition to the above benefits, the policy engine of the healthstack also seeks to empower regulators with tools to experiment with different types of policies and identify the most optimum ones

Researchers and Policymakers

  • Epidemiology: the analytics engine of the healthstack can be helpful in identifying disease incidence, treatment outcomes as well as performance evaluation of medical professionals and facilities
  • Clinical trials: a combined use of analytics and PHR can help in identifying requirements and potential participants, and then carrying out randomised controlled trials

How can it be leveraged?

While the healthstack provides the underlying infrastructure, its vision can be achieved only if products benefitting the end consumer are built using the stack. This means building solutions like remote second opinions using health data from healthcare systems, as well as developing standard interfaces that allow existing systems to share this data. In the diagram below, we elaborate on potential components of both of these layers to explain where innovators can pitch in.

If you are building solutions using the health stack, please reach out to me at [email protected]!

#2 Federated Personal Health Records – The Quest For Use Cases

Last week we wrote about India’s Health Leapfrog and the role of Health Stack in enabling that (you can read it here). Today, we talk about one component of the National Health Stack – Federated Personal Health Records: its design, the role of policy and potential use cases.


A federated personal health record refers to an individual’s ability to access and share her longitudinal health history without centralised storage of data. This means that if she has visited different healthcare providers in the past (which is often the case in a real life scenario), she should be able to fetch her records from all these sources, view them and present them when and where needed. Today, this objective is achieved by a paper-based ‘patient file’ which is used when seeking healthcare. However, with increasing adoption of digital infrastructure in the healthcare ecosystem, it should now be possible to do the same electronically. This has many benefits – patients need not remember to carry their files, hospitals can better manage patient data using IT systems, patients can seek remote consultations with complete information, insurance claims can be settled faster, and so on. This post is an attempt to look at the factors that would help make this a reality.

What does it take?

There are fundamentally three steps involved in making a PHR happen:

  1. Capture of information – Even though a large part of health data remains in paper format, records such as diagnostic reports are often generated digitally. Moreover, hospitals have started adopting EMR systems to generate and store clinical records such as discharge summaries electronically. These can act as starting points to build a PHR.
  2. Flow of information- In order to make information flow between different entities, it is important to have the right technical and regulatory framework. On the regulatory front, the Personal Data Protection Bill which was published by MeitY in August last year clearly classifies health records as sensitive personal data, allows individuals to have control over their data, and establishes the right to data portability. On the technical front, the Data Empowerment and Protection Architecture allows individuals to access and share their data using electronic consent and data access fiduciaries. (We are working closely with the National Cancer Grid to pilot this effort in the healthcare domain. A detailed approach along with the technical standards can be found here.)
  3. Use of information – With the technical and regulatory frameworks in place, we are now looking to understand use cases of a PHR. Indeed, a technology becomes meaningless without a true application of it! Especially in the case of PHR, the “build it and they will come” approach has not worked in the past. The world is replete with technology pilots that don’t translate into good health outcomes. We, in iSPIRT,  don’t want to go down this path. Our view is that only pilots that emerge from a clear focus on human-centred design thinking have a chance of success.

Use cases of Personal Health Records

Clinical Decision Making

Description: Patient health records are primarily used by doctors to improve quality of care. Information about past history, prior conditions, diagnoses and medications can significantly alter the treatment prescribed by a medical professional. Today, this information is captured from any paper records that a patient might carry (which are often not complete), with an over-reliance on oral histories – electronic health records can ensure decisions about a patient’s health are made based on complete information. This can prove to be especially beneficial in emergency cases and systemic illnesses.

Problem: The current fee-for-service model of healthcare delivery does not tie patient outcomes to care delivery. Therefore, in the absence of healthcare professionals being penalised for incorrect treatment, it is unclear who would pay for such a service; since patients often do not possess the know-how to realise the importance of health history.

Chronic Disease Management

Description: Chronic conditions such as diabetes, hypertension, cardiovascular diseases, etc. require regular monitoring, strict treatment adherence, lifestyle management and routine follow-ups. Some complex conditions even require second opinions and joint decision-making by a team of doctors. By having access to a patient’s entire health history, services that facilitate remote consultations, follow-ups and improve adherence can be enabled in a more precise manner.

Problem: Services such as treatment adherence or lifestyle management require self-input data by the patient, which might not work with the majority. Other services such as remote consultations can still be achieved through emails or scanned copies of reports. The true value of a PHR is in providing complete information (which might be missed in cases of manual emails/ uploads, especially in chronic cases where the volume and variety of reports are huge) – this too requires the patient to understand its importance.


Description: One problem that can be resolved through patient records is incorrect declaration of pre-existing conditions, which causes post-purchase dissonance. Another area of benefit is claims settlement, where instant access to patient records can enable faster and seamless settlement of claims. Both of these can be use cases of a patient’s health records.

Problem: Claim settlement in most cases is based on pre-authorisation and does not depend solely on health records. Information about pre-existing conditions can be obtained from diagnostic tests conducted at the time of purchase. Since alternatives for both exist, it is unclear if these use cases are strong enough to push for a PHR.


Description: Clinical trials often require identifying the right pool of participants for a study and tracking their progress over time. Today, this process is conducted in a closed-door setting, with select healthcare providers taking on the onus of identifying the right set of patients. With electronic health records, identification, as well as monitoring, become frictionless.

Problem: Participants in clinical trials represent a very niche segment of the population. It is unclear how this would expand into a mainstream use of PHR.

Next steps

We are looking for partners to brainstorm for more use cases, build prototypes, test and implement them. If you work or wish to volunteer in the Healthtech domain and are passionate about improving healthcare delivery in India, please reach out to me at [email protected].

Data Privacy and Empowerment in Healthcare

Technology has been a boon to healthcare. Minimally-invasive procedures have significantly increased safety and recovery time of surgeries. Global collaboration between doctors has improved diagnosis and treatment. Rise in awareness of patients has increased the demand for good quality healthcare services. These improvements, coupled with the growing penetration of IT infrastructure, are generating huge volumes of digital health data in the country.

However, healthcare in India is diverse and fragmented. During an entire life cycle, an individual is served by numerous healthcare providers, of different sizes, geographies, and constitutions. The IT systems of different providers are often developed independently of each other, without adherence to common standards. This fragmentation has the undesirable consequence of the systems communicating poorly, fostering redundant data collection across systems, inadequate patient identification, and, in many cases, privacy violations.

We believe that this can be addressed through two major steps. Firstly, open standards have to be established for health data collection, storage, sharing and aggregation in a safe and standardised manner to keep the privacy of patients intact. Secondly, patients should be given complete control over their data. This places them at the centre of their healthcare and empowers them to use their data for value-based services of their choice. As the next wave of services is built atop digital health data, data protection and empowerment will be key to transforming healthcare.

Numerous primary health care services are already shifting to smartphones and other electronic devices. There are apps and websites for diagnosing various common illnesses. This not only increases coverage but also takes the burden away from existing infrastructures which can then cater to secondary and tertiary services. Data shared from devices that track steps, measure heartbeats, count calories or analyse sleeping patterns can be used to monitor behavioural and lifestyle changes – a key enabler for digital therapeutic services. Moreover, this data can not only be used for monitoring but also for predicting the onset of diseases! For example, an irregular heartbeat pattern can be flagged by such a device, prompting immediate corrective measures. Thus, we see that as more and more people generate digital health data, control it and utilise it for their own care, we will gradually transition to a better, broader and preventive healthcare delivery system.

In this context, we welcome the proposed DISHA Act that seeks to Protect and Empower individuals in regards to their electronic health data. We have provided our feedback on the DISHA Act and have also proposed technological approaches in our response. This blog post lays out a broad overview of our response.

As our previous blog post articulates the principles underlying our Data Empowerment and Protection Architecture, we have framed our response keeping these core principles in mind. We believe that individuals should have complete control of their data and should be able to use it for their empowerment. This requires laying out clear definitions for use of data, strict laws to ensure accountability and agile regulators; thus, enabling a framework that addresses privacy, security and confidentiality while simultaneously improving transparency and interoperability.

While the proposed DISHA Act aligns broadly with our core principles, we have offered recommendations to expand certain aspects of the proposal. These include a comprehensive definition of consent (open standards, revocable, granular, auditable, notifiable, secure), distinction between different forms of health data (anonymization, deidentification, pseudonymous), commercial use of data (allowed for benefit but restricted for harm) and types and penalties in cases of breach (evaluation based on extent of compliance).

Additionally, we have outlined the technological aspects for implementation of the Act. We have used learnings from the Digital Locker Framework and Electronic Consent Framework (adopted by RBI’s Account Aggregator), previously published by MeitY. This involves the role of Data Fiduciaries – entities that not only manage consent but also ensure that it aligns with the interests of the user (and not with those of the data consumer or data provider). Data Fiduciaries only act as messengers of encrypted data without having access to the data – thus their prime task remains managing the Electronic Data Consent. Furthermore, we have highlighted the need to use open and set standards for accessing and maintaining health records (open APIs), consented sharing (consent framework) and maintaining accountability and traceability through digitally verified documents. We have also underscored the need for standardisation of data through health data dictionaries, which will open up the data for further use cases. Lastly, we have alluded to the need to create aggregated anonymised datasets to enable advanced analytics which would drive data-driven policy making.

We look forward to the announcement and implementation of the DISHA Act. As we move towards a future with an exponential rise in digital health data, it is critical that we build the right set of protections and empowerments for users, thus enabling them to become engaged participants and better managers of their health care.

We have submitted our response. You can find the detailed document of our response to DISHA Act below