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.

Overview

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.

Insurance

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.

Research

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].

The First 50 Confirmed Companies at #SaaSx5

We are almost there. Only 3 days for #SaaSx5.

For people who are have attended earlier SaaSx I don’t need to tell this, but for all those who are attending the event for the first time – SaaSx is an informal event for knowledge sharing by SaaSprenuers for SaaSprenuers. This is why we have it on the beach for the last 3 years. 🙂

If you don’t know what this is about, SaaSx5, iSPIRT Foundation flagship event for software entrepreneurs of India, is being held in Chennai on 7, July 2018 (Saturday). SaaSx has been instrumental in shaping Global Software from India in the last 3 years. This year the theme is to help SaaS entrepreneurs setup for growth over the next 1-2 years.

So the first 50 confirmed list #SaaSx5 companies is here. It has been a slog for us going through all the applications we received, especially the initial drive to set extremely fair criteria and process. Listening to feedback from earlier SaaSx this year we decided to allow Founder and +1 (from their leadership team). Having a tag team we believe is extremely helpful to the founders in learning, assimilating and taking it back to their teams. This also meant that given the small limited space we had to be strict in our curation to ensure most SaaS product startups had an opportunity.

By the time this post goes live many other invites will have been sent and confirmed. We will continue to announce the companies finalized as we go along, so they can start preparing for the amazing sessions.

There are still spots, so if you have not registered or confirmed your invite (check your email), please do it quickly.

saasx5

In no particular order, here are the first 50 (based on their confirmations).

  1. 3Five8 Technologies
  2. 930 Technologies Pvt. Ltd.
  3. AceBot
  4. ADDA
  5. Airim
  6. Almabase
  7. Appointy
  8. Artifacia
  9. Artoo
  10. Asteor Software
  11. BlogVault Inc
  12. Bonzai digital
  13. CogniSight
  14. DevSys Embedded Technologies Pvt Ltd.
  15. FactorDaily
  16. FlytBase
  17. FormGet
  18. Fourth Dimension Software Systems India Pvt Ltd.
  19. Fyle
  20. Gaglers Inc
  21. Godb Tech Private Limited
  22. inFeedo
  23. Infilect Technologies Private Limited
  24. InMobi
  25. Inscripts
  26. JKL Technologies
  27. Leadworx
  28. LiveHealth
  29. Lucep
  30. Mindship Technologies
  31. Netcore Solutions
  32. Olivo Inc
  33. Omnify Inc
  34. Playlyfe
  35. Plivo
  36. PushEngage
  37. QueryHome Media Solutions Ind Pvt Ltd.
  38. ReportGarden
  39. Rocketium
  40. ShieldSquare
  41. Siftery
  42. SlickAccount
  43. Stealth
  44. Strings.ai
  45. Syscon Solutions Pvt. Ltd.
  46. Tagalys
  47. United Translogix Pvt Ltd
  48. Vernacular.ai
  49. Waffor Retail Solutions Pvt Ltd.
  50. webMOBI

[Update: Next 20+ also announced]

All confirmed participants will receive further information in their mailboxes.

Looking forward to an amazing #SaaSx5!

Thanks to our many behind the scenes volunteers who have been tirelessly working on getting us this far and continuing on. Thanks to Chirantan & team from Software Suggest for crafting this post.