Patient Experience, Social Media, Online Community, and The Clinical Blockchain
Patients, friends, and families spend billions of hours online participating in social media discussions utilizing messaging platforms. The healthcare expertise online is global, and the Clinical Blockchain will provide a platform to connect patients and health data stewards.
39% of online health seekers say they looked for information related to their situation. Another 39% say they looked for information related to someone else’s health or medical situation. An additional 15% of these internet users say they were looking both on their own and someone else’s behalf.
Patients have been turning to the internet and Google for medical advice for over a decade. Even in 2017, this advice is “hit or miss” and “Probably less than 25 percent of the time does it end up being a reputable source.”
Patients are also reaching out and utilizing social media and online healthcare communities to compensate for lack of support from traditional healthcare sources. The increased traffic in healthcare focused Twitter Chats, and significant utilization of PatientsLikeMe and MyHealthTeams, demonstrate an unmet need for trust and community that supports patients in between the episodic visits to the doctor, hospital, or emergency room. These companies provide disease specific chat rooms that allow patients to tell their individual stories about their journeys tackling health conditions, and disease. These companies are providing a unique and important service to patients, yet at the same time, the patient’s messages and interactions can be utilized for research and generating investment, while patients receive virtually zero financial benefits. PatientsLikeMe received a $100M investment from the co-founder of the Beijing Genomics Institute in January 2017.
The time spent by patients searching the internet for medical advice and family caregivers researching healthcare information is unrecognized and uncompensated in the US healthcare system. These valuable contributions by patients and family caregivers deserve recognition and reimbursement. 23andMe has over 2 million customers and demonstrates the willingness of patients to place their medical records on a cloud based platform in exchange for valuable services. In fact, nearly all customers have freely agreed to give up all intellectual property and ownership rights to their medical record data to the company.
Let’s be clear here. 23andMe definitely is selling your data to third party companies, research institutions, and nonprofits. 23andMe’s recent $300 million deal with GlaxoSmithkline is only the latest example of the genetics company selling their clients data without reimbursing anyone. But it is not selling your genetic data to those entities in order for them to sell you things. It is selling de-identified, aggregate data for research if you give them consent.
In addition to the DNA analysis, patients can use their genetic data provided by 23andMe with third parties (xcode.life provides and excellent comparison: OhMyGenes, Genetic Genie, etc…) Applications enabled by a clinical Blockchain will enhance the functionality and usability of DNA analysis and enable near term products that will facilitate the integration of genomic data, medical record data, and patient generated data.
In five-to-10 years, genome sequencing will become accessible to almost everyone, and won’t be limited to big companies with serious capital. When that time comes, the FDA will face a serious scenario in which patients access the information in their DNA and analyze it at home with services like IBM Watson. They won’t need to involve any healthcare professional.
While doctors and specialized knowledge will be required in certain reviews and analysis of patient records, there will be an explosion of demand for trusted expertise across a wide range of medical specialties, patient requests, and clinical tasks. Blumenthal described these individuals’ as “health-data stewards.”
To move forward with consumer-mediated HIE, several steps will be required. First, the federal government needs to more aggressively enforce HIPAA’s information-sharing provisions. Second, we need a new cohort of health-data stewards who can help patients manage their own data. Some process of private certification or public regulation will likely be necessary to assure that these new entities can be trusted to discharge this sensitive and complex responsibility. Third, we will need to perfect the technical ability of these new data stewards to access the electronic-data repositories of health-care providers.
 Fox, S., & Duggan, M. (2013). Health Online 2013. Retrieved September 5, 2017, from http://www.pewinternet.org/2013/01/15/health-online-2013/
 Margolis, J. (2017). Seeking Online Medical Advice? Google’s Top Results Aren’t Always On Target. Retrieved September 5, 2017, from http://www.npr.org/sections/health-shots/2017/07/17/537711453/seeking-online-medical-advice-googles-top-results-arent-always-on-target
 Weisman, R., & 2017. (n.d.). PatientsLikeMe gets $100 million investment from Chinese entrepreneur. Retrieved September 5, 2017, from https://www.bostonglobe.com/business/2017/01/05/patientslikeme-gets-million-investment-from-chinese-entrepreneur/25mNWOMy53YuiSAW8kuDRM/story.html
 Brown, K. V. (2017). 23andMe Is Selling Your Data, But Not How You Think. Retrieved September 5, 2017, from http://gizmodo.com/23andme-is-selling-your-data-but-not-how-you-think-1794340474
 Medical Futurist. (2016). Did You Have A Genetic Test? Analyze Your Raw Data At Home! Retrieved September 5, 2017, from http://medicalfuturist.com/analyse-your-dna-in-your-living-room/
 Blumenthal, D. (2016). The Biggest Obstacle to the Health-Care Revolution. Retrieved September 5, 2017, from https://blogs.wsj.com/experts/2016/06/28/how-to-make-health-care-records-as-mobile-as-patients/