Why it is difficult to implement a useful national personal health records system

I fully appreciate the value of having an integrated digital personal health records which I can use when I go to the doctor, monitor my own health, save money from repeated tests, carry papers, anxiety of losing records, and so on — and do all of the same for my family members too. Creating this is a noble idea. But it is difficult to implement. It is difficult even for governments to do this. I would try go into the details of why it is do so and make it useful. (I fully understand that there is a privacy, data exploitation aspect of this too — and am sure many people have written about it, I am not focussing on that here).

Where our important health records are stored?

• Independent laboratories
• Radiology (X-Ray, MRI, Ultrasound) centers
• Clinics
• Hospitals

(in India pharmacies do not keep much health record of you as they are mostly like shops)

Of these, laboratories and radiology centers, usually are technically geared up and they could email you a PDF file of results, if you ask for it. Lab Information System and Radiology Information System are common and your diagnostic results are kept in structured & digital form here.

Clinics are digitally least equipped. Well equipped ones may have an appointment system and billing system, but thats not what we are talking about here. All health records in clinics are in paper-pen form.

Hospitals are more complex places. One way to understand them is to consider them as a combination of lab, radiology and clinic plus few more like inpatient/critical-care wards, operation theatres and emergency. Now from digital perspective, following could be said about many hospitals in urban areas.

• Interestingly you do not readily get a PDF file from radiology and lab in a hospital. Unlike independent diagnostic centers, their business is not about producing this output (PDF file) as most of the times the output given to the doctors (who use paper records readily since it is lot easier for them).
• All the examination, assessment, diagnosis and treatment details are on paper. Primarily because the workload on doctors is way too high and EMR technology is not mature enough yet to solve this problem. I know this from personal experience of developing Bahmni and is also well documented in the book Digital Doctor (highly recommended).
• Good hospitals are great at doing operational things using technology (billing, inventory, appointment, registration, bed assignment and so on) since this has economic value. But when it comes to your clinical record, it is all paper. Some may keep scanned copies, but thats mostly to solve the archival problem, medical records do take up expensive real estate.

I have purposefully painted a picture that is true for urban setup, than for rural or resource poor setups, because I can imagine, rural hospitals replicating this over time — having done many of these myself, as part of Bahmni. Government hospitals are more difficult because of resources, but it could be done in operational areas of the hospitals.

Lets examine the technology solution space

Broadly…

• India luckily has had good IT capacity in the country leading to widespread implementation of software systems across the private eco-system (profit and non-profit) and to some extent in public too.
• We perhaps have hundreds (touching may be even thousands) of software vendors who have health information system business, having one or more products in the area.
• If we count all the lab, radiology, clinic, hospitals systems we must have tens of thousands of distinct softwares running across the country (I mean unique software codebases). Sometimes even in single large hospital, there are multiple softwares running e.g. different departments running their own specialised (or even non-specialised) software.
• Almost all of them have been built without any agreed standard for storage and communication of medical records. The reason is simple, if a hospital wants to shell out only 10–15 lakhs for a software, the software vendor cannot find engineers and domain experts, who understand HL7, SNOMED, ICD10, and then implement it in the code (radiology images are an exception to this). In such competitive ecosystems (of hundreds of software vendors) this is expected. I do not blame the hospitals/clinics too, these standards make software expensive and economic value is non-existent.

Realising value of personal health records

I have also been part of developing personal health records in the past, and I think that, developing a cloud based, API based, secure, generic, extensible, downloadable — personal health record service is doable and fulfilling to develop. It is not very expensive to build it, especially when one is doing it for the whole country, the comparative fund for this is negligible.

But what happens after we have an API in the cloud? How does the data come into it, such that it is useful for citizens.

• Obvious idea is that all these Labs, Radiology, Clinics and Hospitals must integrate with it. But this is not a one time work. Each one of these tens of thousands of the systems need to be enhanced independently. There is no module that one can just stick into these softwares and they will simply integrate— remember they don’t talk in standards. Standards for data, metadata, data transfer, protocols — nothing. Who will pay for this? Once you start examining these systems, you would find all sorts of software — including ones developed by someone’s relative for free, who doesn’t write software anymore. Software integration requires better skills that writing applications.
• The other idea is take few good softwares, that already integrate with the API already and ask everyone to only use “certified” software only. What would happen to the rest of the software vendors. Who would pay for the replacement. This is not practical and cost effective either.
• Lets keep ideating. What about placing data entry persons in each hospitals? They feed in data directly into the personal health records system. Even if we set aside the cost of salary of data entry person, which hospitals now need to bear — what would be the quality of such health records? Remember our health records are very technical to understand, plus not always very legible.

I have been involved in brainstorming this even for a network of hospitals dealing with Cancer, which is much smaller scale, but pulling this off seemed like mammoth task — for the same set of reasons.

There are examples of other countries where this has been tried and we can learn from this (I would love it if it can be done, ensuring privacy issues are well taken of). But it is important to understand that we do not have leapfrogging advantage in this case, applicable in other infrastructure/technology rollouts. The fact that we have been successful at digitising our hospitals etc, is a disadvantage in this case, sadly. Many countries who do not have this advantage may be able to leapfrog*, but for India it seems difficult, quite difficult.

*Poorer countries have to make a decision whether to spend on personal health record systems, or spend that limited fund for buying medicines, setting up hospitals, labs, paying doctors. The choice then becomes obvious.