In my pervious blog I tried to dig into many aspects of Electronic Health Records and I received feedbacks from many knowledgeable Healthcare SMEs. In this article I try to elaborate on Paul Sulkers (my IBM colleague) comments, who pointed out the profitability of healthcare records.
Here I have to acknowledge all the help I got form Stephanie Fetzer from the time I started working on Blockchain and Healthcare, including editing this article. Again, what you read in this article is just a speculation based on the trends in IT and I am neither a futurist nor played one on TV.
Enterprise Data Warehouse for EHR
As Paul commented, Providers, Medical researchers and Population Managers, among the others, spend significant amount of money each year to collect data on a small number of people with certain disease and health issues, which in the best case would have been stored it in an Enterprise Data Warehouse. In a different thread, he also mentioned this about government run healthcare: “Results in either ‘partial data for a portion of the population’ or ‘partial data for all of the population’ depending on the jurisdiction, which in no case globally, does it result in ‘all data for all the population’”. To summarize, the collected data still may not satisfy many of these cases as the researchers wish. Also, building and maintaining an EDW is extremely expensive, which brings us to the subject of this blog on how Blockchin will change the collection of EHRs for further studies.
Patient Ownership of EHR
As I mentioned in the previous blog, in a fully implemented private EHR Blockchain, patient will maintain the ownership and control of their EHRs, and any access will be granted by the patient or healthcare guardian and no one else. This gives a leverage to the patient to treat the records as an Intellectual Property (IP). Like many IP Blockchain use cases (arts, music, patents, etc.) the access to EHRs can generate profit for the owner. With many clearing houses and counter-parties in the current HealthCare Economy you won’t be surprised that this will trigger the creation of many Spotify like services that will pay a royalty fee to the EHRs sharing with providers, payers and medical researchers.
For collected EHRs meet privacy rules, a great deal of work has been done on de-identification of EHRs. There has been many papers and algorithms on how to de-identify an EHR entity, which in many cases can affect the quality of EHR clinical value of the data and sometime make it inherently inconsistent (e.g. newborn birthdate). However, there are still many algorithms to “re-identify” a “de-identified” EHR today. With all advances in genetic/genomic research and genetic treatment, fast forward ten years from now, EHR may contain a significant genomic data (inherently PII) which removing them will completely invalidates the EHR. As a result, even without Blockchain adoption, we can expect current model of EHR collection will be completely obsolete in the future.
EHR Analytics and Blockchain
Unlike traditional EHR collection and de-identification, EHR stored in a private Blockchain can stay protected where they are by Blockchain security, privacy and smart contracts. This will prevent exposure beyond any regulations in each country with a decent rule of law. However, due to volume and versatility of EHR in Blockchain (when fully adopted) getting to the right data in EHRs may require better planning and good investment in cognitive computing to address many shortcomings in current centralized systems.
Utilizing EHR Blockchain will significantly accelerate medical research breakthroughs and other aspects of healthcare which require analytics of health records. However, in my life, worked and lived in various places around the world, learned an American expression the hard way that “There is no free lunch”, which makes me explain both sides of this coin in the next two sections.
Possible Use cases
1. EHR as the Patient’s IP
The common use case would be when patients voluntarily share their EHRs through a smart contract that ensures their privacy in exchange for a value. This value can be free drugs from a pharmaceutical company, free services from a Provider, participation in some sort of treatment, or money. This is not a free lunch and I will talk about the other side of this coin later.
2. Government as a Payer
In many developed countries with a single payer system (aka. National Healthcare), all EHRs paid to the providers can be potentially collected by the government (e.g. e-Health Ontario). Even in the US about 100 million people are covered by Medicare and Medicaid and governed by CMS (over 9 times of Ontario population and larger than Britain or France ). In all these cases, government can profit from collective EHRs, for population health, cost vs benefit and many other statistical analyses. Governments who are recently under serious budget squeeze (e.g. NIH is the US) can also benefit by sharing analytics with the others.
For thousands of years, wealthier people around the world donated money, food and clothing. Donation which was primarily feeding the poor in the past, is considerably changed in the post internet era. In the last two decades we have witnessed the emergence of Wikipedia, which works by donating money, time and knowledge, mainly by middle class and not necessarily wealthy contributors. Wikipedia has changed the way we learn, how we resolve our differences and how a public network operates. Wikipedia is the model of the future as Blockchain is. While option 1 will be seriously in play, many can donate EHRs, through many channels. These are the examples:
Organizations similar to “American Diabetic Association”, or “American Cancer Society” who reach out to people for donations on a regular basis, can accept EHR as a donation. They can operate a private Blockchain network individually or collectively to store donated EHRs. Due to disease overlap (e.g. Diabetes and Coronary disease) coordinated collection with similar institutions would produce much better results. Respectively these organizations can profit by selling analytics of EHRs to interested parties without exposing the private donated EHRs, which also funds medical research in their represented society.
People who have no biological children, can donate their EHR to a public Blockchain after death with the same token they donate their organs today. These EHR can be lightly de-identified and poses no privacy exposure to anyone (except living siblings) even if it contains genomic data. This type of Blockchain can be run by non-profit organizations, consumer/patient advocacy groups or even governments. The public nature of the Blockchain and smart contract transparency will also address the trust issues with the government in some countries.
Overall, due to simplicity, Public Blockchain has a good potential to gain popularity, particularly in a long run. In both cases people can donate their EHRs when they are alive or as a “Will” (implicit or explicit), the same way they donate their organs after death. In the latter case, the death in a smart contract with trigger onboarding the EHR in a different Blockchain.
When it comes to option 1 of the previous section, I am afraid to say that I am not as optimist as I should be about patient’s profitability. Poverty around the world even in developed countries has forced people to sell parts of their bodies (which law allows in each country) to bring food to the table. Therefore, with the same token of selling plasma, bone marrow, or even kidney (illegal in many developed countries), I expect again, many poor patients will be victimized by exactly those entities who may pay them royalty fees (or other services) to access their EHRs. In this new world, patients with rare disease or genetic disorder may became like celebrities with more leverage than the others, but an average patient may not have the same bargain power. I emphasize on this because I have watched many interviews with music artists who were extremely unsatisfied with current royalty model (the amount they get paid for each music play). As you may guess this unfair royalty fees are derived by copyright violations in all countries, including developed ones. They have to accept these royalty contracts because either they have to stop producing music or starve.
I expect, until average patients cannot sell their EHRs collectively (through Unions, Associations, etc.) they may not have any bargain power for profitability from their EHRs.