Can digital identity cure the chronically ill?

It is often said that if you don’t have your health, you don’t have anything. Good health helps to keep us happy and productive, but a healthy lot we are not. The World Health Organization (WHO) has predicted that by 2020, three-quarters of global deaths will be due to chronic illnesses.

What has chronic illness got to do with digital identity management? And, how can a digital identity make us healthier?

Digital identity, health data and complex chronic disease

Health data is defined as being data that is associated with the provision of healthcare services to an individual. This can be data that represents the physical or mental health of the person. In complex chronic conditions, like diabetes 2 or myosotis, it should also include lifestyle data, as factors such as exercise can impact the disease.

Note that I used the word “complex” in the previous sentence. This is an important factor in many chronic illnesses. There is even a medical term for such diseases: complex chronic disease (CCD). A CCD sufferer might have multiple specialists working with them, creating a mini ecosystem of care across disciplines and service centers.

An individual with a chronic illness has a series of data associated with them. If you have ever seen the paper medical notes for such an individual, you’d see what amounts to a major novel of their life as a CCD sufferer. This data is further complicated by being relevant across different medical disciplines, and often across different healthcare treatment centers and often home-care too.

Pulling all of these pieces together to get a good patient outcome is challenging. This is where digital identity, or rather health data associated with an identity, can become powerful.

Identity and healthcare relationships: Facilitating the healthcare ecosystem

If you have ever had an interaction with a doctor, you know that communication is a vital part of the healing process. Good communication lies at the heart of patient-centered medicine and has been shown in multiple studies to be important in providing good healthcare to patients. Getting to see a doctor to communicate in the first place is becoming a challenge. A 2017 survey by Merritt Hawkins found that physician wait times in the U.S. had increased by 30 percent since 2014. This same situation is being replicated across the world as our population increases and the demographic ages.

Earlier, I wrote about how digital identity is a facilitator of robust relationships. In the world of patient-practitioner relationships, this is also true. We need to see a doctor and communicate our health issues but often the doctor isn’t in. One way to help alleviate these issues is to digitize the healthcare ecosystem with digital identity being the pivot that creates the trust needed by a system that shares extremely sensitive personal data.

The need for verified identity in healthcare

The healthcare ecosystem needs to be built on a backbone of “verified identity” – and not just that the patient is verified but all of the actors in the system are verified too. The verification is then the trust of the system and is the equivalent of a keystone.

However, digital identity can go one step further if you devolve it to identity data, of which health data is a subset. The health data itself can be used alongside data analysis tools, such as multivariate optimization or machine learning, to spot patterns and trends based on the often convoluted and interactive data sets of a CCD sufferer.

Of course, what this creates is a mixed bag of highly sensitive data. This data goes way beyond the context of personally identifiable information – this data represents our intrinsic being, often at the DNA level. Security and data privacy in such a system is paramount. The very idea of privacy and security by design and default were invented for systems such as the health ecosystem.

The healthcare ecosystem can, with built-in security and privacy, be therefore designed to serve many of the needs of the modern patient-practitioner relationship. This includes communication, life management, health data sharing, data analysis, and early warning systems.

Built securely, but with great user experience (UX), digital identity could and will, become the mainstay of our modern healthcare services reducing physician wait times and improving patient outcomes.

10 elements of the healthcare ecosystem

The elements shown below are by no means exhaustive but give an indication of some of the more basic needs of the health ecosystem.

1. Verified identities are a must for any system that requires trusted communications and data sharing.
2. Delegation of accounts: Patients often have care-givers such as family members. There needs to be a secure way to create delegation within the system.
3. Robust security: Security of health data is paramount. Security within such an extended data ecosystem is approached in a multi-layered manner.
4. Privacy by design (PbD): Many healthcare and personal data-based systems are bound by the tenets of PbD. The U.S., for example, has the HIPAA Privacy Rule, which sets out the requirements for ensuring ePHI (electronic protected health information) is protected. Similarly, the EU’s GDPR will dictate a number of design remits to ensure PbD is enabled in a healthcare ecosystem.
5. Ease of use and omnichannel options: An obvious way to engage patients in the health ecosystem is to use an app on a smartphone. However, other channels such as smart TVs, smart watches, and digital assistants should also be accommodated. This is especially important as many of the users will have some limitations and disabilities.
6. Communication channels: A health ecosystem is nothing without secure and easy to use communication channels. The engagement of the services with the patient is the hardest part of designing the ecosystem. It is as much about culture change as it is about technology.
7. Data analysis: This is where data can become truly powerful for patient outcomes. It isn’t only about sharing information with healthcare practitioners. The system can be designed to communicate with the patient themselves. For example, patient-generated data and lifestyle information could be used alongside other health variables such as blood test results and changes in medication dosages, to spot trends and patterns that lead to better, or worse, results.
8. Extended options such as blockchain: There are a number of uses of the blockchain in the system including access to genetic data. A privacy enhanced blockchain extension can add value such as allowing non-identifiable data to be used in research.
9. Storage: Patient information such as scan images, doctors’ letters, and so on, should have secure storage provision in the system.
10. Anonymization: Ultimately, where data can be anonymized it should be. If an ecosystem was to become part of a wider research community this would be essential.

Healthy data and the future of health

One of the reasons that I wrote this post is that I am a CCD sufferer. I live each day trying to be healthier and to be aware of the wide set of variables that can impact my conditions. I also have to run the gauntlet of myriad doctors and specialists, each with a “view” of what is best for me. It is confusing and annoying in equal measure.

As a person who understands the power of digital identity data, I know that many of the issues myself, and countless millions of others like me deal with, can be made easier. As our population ages and increases, we must make the most of what we have and that is information. It is a powerful tool, that used in the right way, can build bridges between the patient, the disease, and the healthcare giver. However, as with any system that is built on data, especially highly sensitive health data, security and data privacy are an essential component and cannot be sacrificed.