Online Personal Health Records: My thoughts

The blogosphere got a bit excited today with an article on New York Times about the plans of Google and Microsoft to offer an online personalized health care records for consumers. This excitement was further enhanced by a post by Philipp Lenssen with screenshots of a prototype of Google Health service.

Right now, our health care records are at the mercy of doctors and insurance providers. US federal law allows us to request our health care records. However, these records are only available in a paper format. Even with the doctors and insurance providers, it is kept either in a paper format or in a proprietary software format. There is no option for patients to have their health records in the digital formats. After some egging by the Bush administration, some of the providers have moved the health records online. For example, my health care provider is offering my health records online. But it is not the case for everyone. Even among those providers who offer health records online, we are at the mercy of insurance companies or health care providers. There is no independent centralized personal health record “repository”, with the user (patient) having a complete control of who has access to what information about their health. This is the area which is interesting to both Google and Microsoft. Both the companies are working on a system to provide this opportunity for users. Please read the New York Times article for more information on this. I would also like to point out to Adam Bosworth’s detailed post on this topic. Fellow TechBiz Media blogger, Deepak Singh, has written quite a lot on this topic. Unlike Deepak, my interest in this area is more on the peripheral level. I will discuss about certain issues that are of interest to me and offer my opinions related to the privacy issues associated with an online Personal Health Record (PHR) system.

The first and foremost concern for me is that the health care records should be stored in a system that adopts open standards. Efforts are underway to develop open standards based methods to extract RDF data from xml documents. It is very important to develop Microformats to manage healthcare information. A company that uses open standards to store health data on their online system will gain the confidence of the users. This will ensure that user’s vital health care information is not locked down under a proprietary system and it is accessible without a need for a particular vendor providing applications.

The second and equally important concern is about the search engine offered by such vendors. It is very vital that a vertical search engine that could provide accurate information is made available. It is no easy task and companies like Google, Microsoft and many startups are working on this area. Since we cannot take chances with our health, the accuracy of the search engines becomes important. I expect Google to have an advantage in this area, even though Microsoft seems to have made some important acquisitions in this regard.

The final concern is about privacy. Many people have written about it. In fact, the fight over privacy could be the reason for the delay in the implementation of online PHRs. Some people are worried about putting all our health related information under a single company. I am not too worried about it. I would be comfortable with Google having my records than my insurance company or a health care provider or a startup as long as Google offers me a complete protection of my privacy. I am not all too worried about govt.’s ability to scrutinize my health records either. Anyway they will get my health records even if it is stored in a paper format. In fact, a big chunk of Americans don’t mind govt. looking into their health records including their genetic information (via link). As long as I have confidence that the company that offers online PHR will not mine my health data and not allow anyone else to look at it, I am fine with the privacy implications. It is up to Google or Microsoft or any other company, clamoring to hold my PHR data, to convince me on the privacy issues. It is a big mental shift for most of the people. Since I have understood about privacy in this Web 2.0 era and  I am comfortable with the new age ideas about privacy, I am not all too worried about it when it comes to online PHRs. As long as I have a system where I can control who views what from my health care records, I am ready to use such a system.

It is time we make a paradigm shift about how we manage our health care records. It is time we learn more about our health and take into our hands the power to make intelligent and informed decisions about our health. To do this, an open standards based vendor neutral PHR with a good search engine and a good privacy policy is needed. Once we bring in this paradigm shift, we can then start wondering about how we can use the “artificial intelligence” of the semantic web to help us manage our health care better.

I would like to hear about what you think about online PHR systems and your concerns about it.