Featured Expert:

Fred Trotter, founder and CTO of CareSet Systems, and co-author of the first Health IT O’Reilly book: Hacking Healthcare.

Fred Trotter is a healthcare data journalist and author, focused on the intersection of cybersecurity, healthcare data, and healthcare technology. Fred is a healthcare data journalist and author, focused on the intersection of cybersecurity, healthcare data, and healthcare technology. He won the 2016 healthcare data liberator award for his work opening significant healthcare data sets. He was a founding member of the first Healthcare Industry CyberSecurity Task Force and co-authored the report on improving the cybersecurity of the healthcare industry which was presented to the US Congress in June 2017. Since then he has filed an FTC compliant against Facebook, detailing. Facebooks treatment of the patient communities that use the Facebook platform.

Patient Data & Health Equity

There are a couple of issues that are so big and dramatic that we need to get the big picture stuff first. One of those is, everybody deserves the same high-quality care. Fred shares that data should be used for patients and not against them. According to him, Susannah Fox says that Patients should be treated as assets and not liabilities. We need to stop thinking of patients as an inconvenience but rather, as part of the solution.

According to Fred, in talking about diversity and getting all the best ideas from all the people, we’re somewhat blocked by these underlying value questions where we’re not on the same page in terms of values. I think there is an ongoing alliance that is made on a dynamic basis, by people who care about where we are in this industry and people who don’t. He says that it is pretty easy to see who does and who doesn’t share the same values. He says, if I make the statement data should be used for patients and not against patients, the things that trickle down from that statement are:

  • It is unethical to data siloing

  • It’s unethical that your data has your asset for a payer or a large healthcare system to use and it is not your (the patient) asset to leverage. But instead, you’re entrusted with that in the same way that we entrust our bank with money and we expect a return on that money, we should expect a return from the data that people host for us and question the research the data is shared with.

Let’s say the circumstances are that you’re told that nothing is being done with it that’s one thing but if they are selling the data, or the data is being used to do profit analysis or financial planning. That it is being exercised but not also exercised for social good, research, and programs to determine what is happening, that is problematic.

To be clear, financial analysts are is not wrong, however, it is wrong if systems are only utilizing that as a form of using the patient data, against the patient because really what they are doing is using the data to inform one side of financial translation as the other side of financial transactions creeps towards completely unaffordable. In that case, they are just using the data against the patient.

If the system is using the fact that they understand the big picture of the whole system in terms of money, because of the individual contribution of these piles of data and then they are using that to negotiate against patients at large. I am certainly not suggesting that we shouldn’t do financial analysis, as I’ve helped people with financial analysis around data. That’s a good thing, it’s a good start. But, it must only be a starting point. Data hosts have to then question who else is curious about this data that is working on a hard clinical problem.

Fred warns that we shouldn’t wait until the larger problems in health care are solved, to start checking in with people and asking about these issues.

For those of us playing a different sport of reforming, changing healthcare, and making sure that we do a better job at taking care of people, those people can be reached with a message of, including researchers. If that’s already done great. Are you including researchers from historically Black University, or Tel Aviv University or researchers from another country? Maybe they have a different perspective on the healthcare system. Perhaps, let’s do a collaboration between us and Sweden or another country, or institution. The point is that you should be constantly asking the question, what more can we do to get a different perspective, and use that diversity of thought to ensure that we’re not missing critical things.

The irony is, it might be the community that you don’t think very much of that provides the clinical insight that cures the disease that your community has. A classic example is the rare disease community. The rare disease community has answers in their suffering, where we will learn things from them that don’t help with their suffering but because we try, we learn things about our major diseases. I think that’s a perfect example of how we need diversity of thought in medicine and healthcare.

Video discussion filmed at the Health Datapalooza 2019 Conference.