|
It is now a good time to engage potential Users with more Hackathons... About the Personal Health Record Some of you may have already heard about Personal Health Record (PHR), as its popularity has been seesawing across the web and through the years since its very first appearance in a German academic journal in 1969, presented as “personal record linkage” [1]. Today Wikipedia defines PHR as follows: A personal health record, or PHR, is a health record where health data and information related to the care of a patient is maintained by the patient. This stands in contrast to the more widely used electronic medical record, which is operated by institutions (such as hospitals) and contains data entered by clinicians or billing data to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results, and data from devices such as wireless electronic weighing scales or collected passively from a smartphone. There are actually few different definitions all over the internet, but they probably all have in common the idea of “putting patients in control”, as a very interesting paper issued by 2020health.org was stating in 2012, a work led by industry independent experts, supported by an unrestricted educational grant from giant Microsoft. Some of the early adopters As a matter of fact, Microsoft has probably proven one of the long term, resilient and determined PHR advocate, introducing in October 2007 Microsoft HealthVault, a web-based personal health record designed to store and maintain health and fitness information. HealthVault addresses both individuals and healthcare professionals, and in June 2010 expanded its services beyond the United States to include the United Kingdom, so engaging interest of NHS. In particular, as reported on their website, Microsoft HealthVault has been developed to be an open platform for security enhanced data sharing amongst NHS organisations and the citizen. Amongst the long list of prominent players that took a stake into this challenge, it is worth also mentioning AT&T, Intel, Walmart and other Fortune 500 that founded Dossia [2] in 2006, releasing their API (Application Programming Interface) in summer of 2009, with the intention of offering a PHR to its employees. A broad range of applications It is very easy (and it does not take a technology geek) to start thinking and getting thrilled about the application of PHR and its plentiful of business opportunities. Especially at this “green field” stage, it is easy to look with enthusiasm at a plentiful of business opportunities in (i) decision-making about quality providers/services, (ii) supporting personalised medicine, (iii) enable remote monitoring, (iv) document alternative and complimentary therapies and supplements, (v) design targeted training and nutrition program, and much more. There’s probably enough to create and enhance competition within private health care industry for a very long time. PHR can also integrate with electronic self-tracking devices that record activity levels, sleep, diet, blood pressure and heart rate. While many people already use these apps to discover connections between eating, drinking, sleeping, smoking and exercise habits, insights into our health might also be found by connecting this information to our medical history stored by GPs. These connections are not only useful for us as individuals, but on a much wider scale for research and public health in general. Not to mention the economic benefits (both in terms of revenues and savings) to healthcare providers. To add a bit more of social context and help appreciating how Digital Transformation [3] is expected to help and drive the way that both Government and private business will operate with the future of PHR, please consider the following NHS data – a clear sign of “increasing demographic pressure”:
Sizing the market With regards to information publicly available on the web, there have been several attempts to assess and size the Personal Health Record market, which, for obvious reasons and even under broad assumptions, is pretty a challenging task. Figures in following table (pretty out of date) have been sourced from publicly available internet information for the indicative purpose only. [Picture to be completed] (*) Frost & Sullivan research overview lists the following decision support databases being taken into account:
Swinging PHR mood up and down But, as mentioned early on, PHR pioneers have been swinging their mood up and down during the years. Think about Google, introducing Google Health as a personal health information centralisation service in 2008 and cancelling the whole initiative later in 2011. The service allowed Google users to volunteer their health records (either manually or by logging into their accounts at partnered health services providers) into the Google Health system, thereby merging potentially separate health records into one centralized Google Health profile. Volunteered information could include "health conditions, medications, allergies, and lab results". Once entered, Google Health used the information to provide the user with a merged health record, information on conditions, and possible interactions between drugs, conditions, and allergies. On June 24, 2011 Google announced it was retiring Google Health in January 1, 2012; data was available for download through January 1, 2013. The reason Google gave for abandoning the project was the lack of widespread adoption. Earlier in 2008 a group of researchers from CITL (Center for Information Technology Leadership) and Harvard Medical School described Personal Health Records (PHRs) as a rapidly growing area of health information technology, despite a lack of significant value-based assessment. They presented an assessment of the potential value of PHR systems, looking at both costs and benefits, taking into account provider-tethered, payer-tethered, and third-party PHRs, as well as idealised interoperable PHRs. An analytical model was developed, and the analysis showed that all forms of PHRs had an initial net negative value. However, at the end of 10 years, steady state annual net value got positive, interoperable PHRs provide the most value, followed by third-party PHRs and payer-tethered PHRs also showing positive net value. Provider-tethered PHRs constantly demonstrated a negative net value. For a very long time plenty of sources have been raising issues about security, privacy, or data-sharing problem, in an effort to assess and explain why PHR was not concretely taking off. But some of the most senior healthcare editors had an interesting different view, rather advocating that the main reason the public doesn't sign up for PHRs “en-mass” is they don't really care that much about their health. An American healthcare editor and writer for the last 30 years wrote earlier in 2012 that concerns about security and privacy, as well as reluctance of providers to share patient information surely slow things down, but at its core this is about “Customer apathy”. Article mentioned that “most people care more about their cars than their health. They know more about automotive specs than they do about physiological specs”. At the core of the issue there’s the fact that preventive medicine has always been a hard sell, and it’s hard to convince most healthy people (especially men) to get a colonoscopy or any other screening test when they aren't experiencing any pain. Focus on UK: National Information Board (NIB) Roadmap to 2020 [4] So, following the above context, what’s going on at NHS, and how is UK Government rolling up sleeves and handling this digital transformation? Some interesting work was undertaken by McKinsey in 2014 [5] to identify the benefits of digitally enabled processes in the NHS, drawing on 34 systematic reviews and a review of 13 integrated care models worldwide. This work found that four elements of integrated care had the most impact
All of these elements are effectively enabled by digital technologies. In light of the above work, and following the release of the National Information Board’s vision document “Personalised Health and Care 2020” (PHC2020) in November 2014, final roadmaps have been published in October 2015 describing in more detail how the proposals will be taken forward over the next 5 years. All papers are solidly grounded on the principle that Citizens will have the ability to securely login, based on their location and information from their Personal Health Record (PHR) that they have consented to provide, and will receive personalised, pre-curated information to help them manage their health. Roadmap is articulated in six workstreams, and a high level, simplified summary representation is shown in next page, for the only purpose of letting the reader understand how broad, complex and multifaceted this challenge is. [To be completed - Insert here A4 landscape summary of Roadmap What are the obstacles to face for a widespread adoption? Cultural, Technological and Political changes are required in order to make this happen – technology on its own would likely mean no success. There is an educational path to be designed and pursued, balanced in order to:
To such an extent, we are probably at a stage where the “supply” (technology focused) could be there relatively soon, but the “demand” (cultural focused) may be weak for relatively long time: online users are reluctant to participate. It is a fact, as highlighted in recent studies, that, as of 2015, 50% of Brits don’t know their blood type, and are not showing particular interest in storing, comparing and investigating trends over time based on their health check data, as interest is only “triggered” by pain. Many people do not feel comfortable sharing results of health tests with even close friends and family. And if Patients are hesitant to participate, Doctors are not in a better position: an Accenture survey [7] highlighted that only about a third of interviewed US doctors (31%) think patients should have full access to their electronic health records. Most doctors (64%) believe patients should have limited access, and 4% believe patients should have no access to their electronic health records for fear that patients will not fully understand the information and become confused. Digital transformation will have to seek and generate both “patient and doctor pull”, and advocates of PHR must emphasise the constant transactional benefits, rather than access "per se". As a good analogy, the attraction of online banking is the convenience of frequently transacting, not reading your bank statement. Perhaps it is similar in health. Last, but not least, there is a huge political issue to be solved:
[To be completed - Insert Patient, GPs and Private Corporates chart, listing key obstacles from both parties] Are you ready for a Hackathon challenge? Hackathon is a right place where people (often with very different backgrounds, but common a interest) meet and work jointly on a common challenge. Together with LeanAdvantage (amazing and experienced facilitator) we are looking for sponsors and opportunities to set up a London Hackathon for PHR. We will keep you posted! Notes [1] Journal was a supplement to the “Methods of Information in Medicine”, amongst the categories of “computers, humans, medical history taking, medical record linkage, medical records, and research”. [2] Dossia is a Personal health record service offered by some of the largest employers in the United States. Along with Microsoft's HealthVault, Dossia is one of the largest PHR deployments in the world. Unlike Microsoft's PHR effort, Dossia is based on open source software. [3] Digital transformation is the changes associated with the application of digital technology in all aspects of human society (Wikipedia). [4] The role of the National Information Board is to put data and technology safely to work for patients, service users, citizens and the professionals who serve them. The NIB brings together national health and care organisations from the NHS, public health, clinical science, social care and local government, along with appointed independent representatives to develop the strategic priorities for data and technology. NIB works with the Department of Health. [5] Source: appendix to NIB workstream 2.1 roadmap. [6] There have been lots of studies reminding people that if they try to get medical help from the internet (“Dr. Google”), they are limited by their own biases as well as the haphazard nature of the web. [7] On behalf of Accenture, Harris Interactive conducted an online survey of 3,700 physicians across eight countries: Australia, Canada, England, France, Germany, Singapore, Spain and the United States. The survey included 500 doctors per country (200 from Singapore) and assessed physician’s adoption, utilisation and attitudes toward healthcare IT. The research was conducted between November and December 2012.
0 Comments
|
RSS Feed
