A Digital Health Manifesto
It’s easy to get excited about the future of healthcare. Thanks to advances in web and mobile technologies there is tremendous potential to create exciting new health services. Hundreds if not thousands of apps are being developed that touch on practically all aspects of healthcare, targeting patients-consumers, clinicians, administrators, insurance companies, researchers and healthcare authorities.
Something is clearly happening in healthcare, but a more fundamental question is, will technology enable a radical improvement in the quality, productivity and accessibility of healthcare. It’s an important question because the future of healthcare, from a budgeting and staffing perspective, is in fact not looking good. In most developed nations healthcare costs have been increasing rapidly (and faster than GDP) due to the rising costs of drug development and the increasing prevalence of chronic illness (in turn due to ageing populations). Those cost drivers aren’t about to disappear–and this while the world economy itself is suffering from chronic illness.
The future of healthcare may look exciting from a gadget perspective but there is in fact a real danger that healthcare in many countries will first get worse before it gets better. Hence the importance of the question: will technology-driven innovation be the right medicine, radically improving quality and productivity just when we need it? Unfortunately, the answer to that question isn’t simple. There are technical issues, legal issues, policy issues and business model issues to address.
However, looking at the state of technology and medical science today, it is possible to imagine a radically different and vastly improved healthcare experience, especially from a consumer-patient perspective. It is a healthcare experience that should, in principle, be possible today if we found a way to deal with the various obstacles more rapidly.
Looking at the state of technology and medical science today, it is possible to imagine a radically different and vastly improved healthcare experience
Let’s call this vision of a better healthcare experience a digital health manifesto (feel free to contribute to the manifesto – comment below or via Twitter and Facebook and we’ll update the text).
A Digital Health Manifesto
1. A transparent market for healthcare services, based on cost, outcomes and reputations
We expect access to a transparent market of healthcare services provided by hospitals, clinics, GPs, psychologist, life/health coaches and so on. With ‘transparent’ we mean knowing who they are, how (cost)effective they are based on objectively gathered costs and outcomes data and how satisfied their customers/patients are. Ideally, we will be using one of several competing recommendation engines that suggest caregivers and healthcare programs relevant to my current health needs and location.
2. Access to remote/mobile health services
We expect many if not most of our interactions with healthcare providers to be done on a remote basis via online tools. This means we reduce the number of face-to-face interactions (and thus reduce travel, time spent in waiting rooms), while simultaneously increasing the total amount of time ‘connected’ to the healthcare system via remote monitoring technology and diagnostic services. An obsolete reimbursement model and regulatory framework should not be the reason why we have to sit in waiting rooms and neither should it prevent us from gaining access to more frequent and/or ongoing services that can be provided efficiently on a remote basis. Thus, we expect access to a globally competitive market of remote diagnostic services, including genetic testing, tele-consultations and remote monitoring of health indicators (e.g. cardiac, blood pressure, sleep, etc). We are willing to give these services access to our medical records and data if it improves their diagnostic and predictive power. And if we are chronically ill (or in need of geriatric care) we expect to stay at home for as long as is medically and technologically possible. We are willing to take more responsibility for our care, if we have the (monitoring/tele-health) tools and information to be able to do so.
3. Access to updated/complete electronic health records, medical knowledge and decision support tools
We expect our care givers to have access to the best and most up to date clinical information and medical decision making tools. These include accurate and always-up-to-date medical records, diagnostic tools, treatment guidelines and research results. As patients we also expect to have access to such information, as a basis for constructive doctor-patient communication. We do not tolerate medical errors. We expect data-driven care; and we expect to have access to that data too.
5. Access to certified personal health record services, devices and wellness apps that integrate with electronic medical records and are accepted by clinicians
We expect access to a competitive market of certified and interoperable personal health record systems, devices and wellness services that can help us achieve our personal health and fitness goals. ‘Certified and interoperable’ in the sense that these services can plug into clinical medical record systems and are accepted by clinicians. We want to take a more proactive and goal-orientated approach to our health, and we expect our general practitioner to help us in that regard.
6. All my anonymous health data available to researchers
We expect medical researchers and scientists to have access to our health records data – it is our data and it should be put to good (and meaningful) use.
The trouble with health data transparency
It’s disconcerting that the vision described above isn’t yet a reality. It could be and it should be. The data is out there. Also, there are thousands of developers and entrepreneurs clamoring to create powerful, user friendly health devices and apps. The trouble is, a lot of the data while ‘out there’ isn’t yet accessible or being used optimally (meaningfully). Medical records are locked up in closed legacy IT systems. Doctors and hospitals have few incentives to share data and invest in open technologies. Current reimbursement models, privacy legislation and security concerns deter investment in new technologies and new ways of working. A lack of standards and the fact that most new gadgets and apps are single-purpose products means that we’re not yet seeing powerful ‘ecosystems’ of synergistic products and services emerge.
Where are the platforms?
Looking at the history of recent technological progress it is clear that open standards and APIs (e.g. TCP/IP and HTTP for the web, Apple’s iOS for mobile apps, Facebook’s API for social gaming) have been instrumental in unleashing waves of innovation. Something similar is needed in healthcare. Imagine if developers had access to open or partially open data platforms that link up health/medical records, medical research data/results, treatment guidelines, and body-monitoring data. The resulting boom in clinical informatics, clinical decision making tools, collaborative EHRs and other ‘Dropbox for health‘ type tools will put us on the path to data-driven care and likely lead to radical gains in healthcare quality and productivity. It will make our digital health manifesto a reality as opposed to a dream.
We all have responsibilities
To get there, all stakeholders in the system have responsibilities:
Policy makers need to focus on standards setting, ‘open data’ services and improved reimbursement systems (creating the right incentives).
Healthcare providers and their IT partners need to start opening up their systems and transition from a document management approach toward a patient-relationship/communication approach.
Medical information publishers such as academic journals and medical associations need to take a more innovative approach to IP and content distribution, so that the world’s medical knowledge is made instantly available to those who need it.
Startups need to think beyond single-purpose products and explore how they can plug into the existing healthcare plumbing and link up with other synergistic developers.
Progress certainly is being made. For example, the US government has introduced legislation to encourage the interoperability of health information while other public authorities are building open data service platforms (e.g. Almere Data Capital/the Dutch Health Hub).
Healthcare providers are taking steps to open up their systems (e.g. the US Department of Veterans Affairs’ blue button initiative). EHR providers too are beginning to open up their datasets to external developers (e.g. EHR company PracticeFusion is working with Prior Knowledge to open up the dataset to developers and entrepreneurs). And EHR providers like Avado and PatientsKnowBest are trying to build systems that are more patient-doctor collaboration tools than clinical document management or bill-generating tools.
Startups too are beginning to think about APIs. For example, data storage and file sharing company FolderGrid is not only focused on building a secure (HIPAA-compliant) system but is also trying to create an open platform on which other IT developers can build. Makers of body-monitoring gadgets like GreenGooseare releasing APIs so that 3rd party developers can build apps on top of their platform.
Initiatives such as these are exciting but the digital health revolution, from a data integration perspective, is still clearly in the starting blocks. Many challenges around technology, business models, strategy and policy remain.
(Image credit: http://geoffmcdonald.com/the-manifesto-manifesto/)