The intention of this post is to describe problems that we are facing with our current information situation given the COVID-19 pandemic in healthcare and opportunities we have to improve this right now, in the near future and long term. This post aims to indicate some directions to solutions or mentions aspects of solutions. I strongly believe technology is advanced enough to leverage solutions but the focus on information technology or Patient Centered Information Technology is not strong enough. I also strongly believe that Information Cures if managed the right way in this and many other situations
This post is triggered by the current challenge that health systems face globally due to the COVID-19 pandemic caused by the SARS-CoV-2 Coronavirus, but it will revisit some of the known arguments coming from the considerations on Patient Centered Information Technology.
The patient centered perspective on COVID-19
In the middle of this crisis it becomes evident that it is essential to view and understand everything from a patient centered perspective since
- Everybody is a patient regarding this pandemic whether ill or not
- Patients are important actors to not only receive information but also to facilitate the right actions and to provide additional, essential information
Even if skills and possibilities are different in the patient population, since some people are working in healthcare and governmental functions and others not, still the basic information need is the same. This pandemic essentially democratizes lots of the information need, possibilities and fears that we are facing regardless of the fact that we are dealing with it or not. This post only mentions some of the important aspects and also reflects only my very personal view and experience.
These are some of the important patient centered questions that I want to mention in the context of the COVID-19 pandemic
- How do I know if I am infected?, ill?, cured?, protected?, at risk? or not?
Answering these questions calls for an official, clear and transparent and understandable explanation of the current disease that is comprehensive to everybody in the patient population. It should be based on the most current evidence. Since the disease spreads quickly all information should be updated in real-time from an authorized source. Additionally, it needs to be known how the assessment for each question is actually done and where and how this information can be accessed. In fact, the real challenge here is not to update the information in real time (many advanced technological options are available to simulate disease spread and to calculates options). The real challenge is to communicate this in a comprehensive way that everybody understands what to do according to each individual level of health literacy (what everybody is able to understand from healthcare). Some information comes from reliable sources, but there is no way to determine if the information is understood by patients to make the right decision. The digital information society needs structure, transparency and control of information which works in both directions in times of a crisis. (see also the questions about trust below)
- How do I know if others are infected?, ill?, cured?, protected? at risk or not?
Official statistics are available to everybody. Knowing where to find reliable information is also important to know the situation of my neighborhood. Statistics don’t help to make the right individual decisions. The virus spreads locally and hence the local risk needs to be assessed. To identify infected and ill people quickly to secure others is vital for the safety of a whole population. Common analogue mechanisms to identify all persons that are at risk of the disease in the radius of an infected person are way too slow to allow precise and quick decisions. This leads to the necessary centrally imposed restrictions which are still no guarantee to protect the individual. The only thing that really helps is a precise tracking of personal contacts. This immediately triggers lots of data privacy concerns which are reasonable and correct. In times of a crisis of these dimensions individual rights will be reduced anyway in one way or the other. They should be administered in the most effective way possible. This calls for a clear and transparent risk model which doesn’t exist yet. The risk model has to weigh the right of the individual to be protected against the information need of the population/neighborhood to also protect themselves. Lots of options are available to make this work. In order to support local data sharing everybody would need the possibility e.g. to give consent to this. Even if not acceptable for some persons, examples from the ePatient context clearly show: privacy kills and openness saves life in some situations. If people are open to give feedback about their contacts and risk profiles this also helps to refine risk assessments and prognostic values on a global scale. Additionally, local information sharing leverages the possibility to organize support locally. The reorganization of healthcare services in favor of the most critical patients and the quarantine requirements in crisis blocks healthcare services away from the patient needs that would be available to them under normal conditions. Local information sharing bears the possibility to build local alternatives.
- How do I know which information I can trust?
There is no official single source of information and trust. Even if official sources are well known and trusted the modern information economy is vulnerable. Sources and information should be certified and approved in a transparent way that makes it easy to identify trustworthy sources and information. As information changes also the information need changes. Together with the information also process of reassessing the information need of patients should be documented. Examples range from updating FAQs to supporting digital adaptive dialogs with patients. Alternative, untrusted sources would have less possibility to target any additional information need.
- How can I access healthcare services?
To know where my next healthcare facility is, is usually not a problem in a modern society with a functioning healthcare system. But still there are many unmet needs. In the COVID-19 situation one of the essential problems is that healthcare services become exhausted and personal contact carries a risk. Hence patients should have the possibility to access healthcare services differently. The separation of physical healthcare services from healthcare information services is a necessary distinction. Understandable information carries a huge value for each individual patient. It is essential to make sure information is understood by patients (see above). Information also flows easily both ways using remote connections. No physical contact necessary. Technically many different ways of accessing information are possible, reading documents, messages, becoming reminders or using direct calls with video support or not.
- How do I know what I must, must not, can or can’t do to help myself or to help others?
Every local government makes sure to enforce local restrictions and give guidance at this time. Since there are official protocols and regulations in place to assure this, all this happens according to official procedures. However, all these measures are rather coarsely grained since they address the need of a system and assures right and order and safety on a system, population level. This centralized architecture is absolutely necessary and out of question. But still there is a need to optimize and manage local actions in a decentralized manner. Transparency and local management of resources for health, food supply and information prevents panics and leverages local support. Open and transparent communication and information that flows back and forth between patients and health and governmental functions must be ensured. I trust this also happens already within the communication of the responsible persons. Adding value to support local actions for prevention or management and support for the workforce, childcare, public transport needs a local information management beyond purely health related questions to manage risks. There are many recent examples available how information systems support local resource management for housing, transport and care that are even successful businesses. To copy the same mechanisms in times of a crisis can achieve great value for patients and populations if there is a governance and transparency of these possibilities.
