October 29, 2018

Patients, Data, Care, Research

Patients, our health information, and better care are in my email this morning. 

I was very much pleased to get an email from a specialist's office. It not only invited me to use their patient portal to manage my relationship with the office, they actually set up an account and gave me a one time use password. 


This is opposed to the deal at my primary doctor. I had a portal account there. It was great. I could see all the reports and letters other specialists sent about treatment.  For example, once I read the details of a specialist visit before we had the conversation that was written up. That was a little too proactive. I fired that doctor later in the day when we had our appointment.

My primary doctor's practice got bought up by a rapidly growing hospital system. My portal was closed pending a change to the new system's patient experience. Closed, not converted. Way to go Jefferson - quality care. And  - I have to go into the office to apply to join the new portal.

Also in my email today, Faster Cures aka the Milken Institute, sent a link announcing "new initiatives to engage the private sector, strengthen global partnerships and harness the power of data to save lives." Their stated priorities are:

  • Advance policies that break down regulatory and other barriers to getting scientific advances to patients more quickly;
  • Identify incentives to increase private sector investments in biomedical R&D;
  • Build global communities that expand capacity to treat disease;
  • Put patients – and their health data – at the center of biomedical research and analysis.
They go on to say: 
"Groundbreaking cures require access to, and analysis of vast amounts of health data. Researchers face obstacles to collecting these data because medical providers often fail to share information with patients, or because patients distrust a system that does not explain how the data will be used or ensure its privacy and security."  - (Emphasis added) 

The press release goes on to announce the new board of very impressive medical providers  - doctors, insurers, business people. One has a Nobel. That is impressive! 

While all of the very impressive people are at times patients - none is at the table with a portfolio explicitly representing patients. So who is gonna, "Put patients – and their health data – at the center of biomedical research and analysis?" Ya know - so that patients trust the system. 

Feels like the - I need to come into the office and apply - idea. Patient access as an afterthought. Maybe while we are there, you can address the distrust the system part too. Ideally in something other than an impressive if unreadable terms and conditions page.  

In fairness, I think the Milken Institute is doing good stuff. I just think it would be better if they could figure out how to do what they say is a priority - Putting patients at the center or at least in a seat at the table. 


October 25, 2018

PBM Without Rebates (aka Kickback?)

Pharmacy Benefits Manager Express Scripts has announced a program with 18 large employers where rebates are passed back to the employer, in total. The Blog Drug Channels says;
You should pay close attention to this b.i.g. news. It is structured so that Express Scripts will not profit from the flow of funds from a brand-name manufacturer to a plan sponsor. What’s more, the PBM’s compensation will be fully delinked from drug list prices.
Drug Channels sees this as a "PBM compensation approach could be an important step in our industry’s journey toward a world without rebates."

I hope so. I am not convinced. No rebates and lower prices make more sense to me. In the meantime is this a move to no rebates or a move to the employer getting all the money.

Rebate bucks are not clearly linked to the people and conditions that generate them. So chronic health issues can become a source of subsidizing healthcare at large employers that are not seen as connected. For example, insulin rebates flow to employers, even if the plan doesn't cover the insulin and the PWD pays full price. So the process transfers deductibles from people with diabetes to other employees in the system. I am sure the argument would be that all plan member face similar deductibles.

Drug Channels asks:
Will the funds be used primarily to offset total plan costs for the employer and premiums for everyone? Or, will the money offset the out-of-pocket costs incurred by the patients whose prescription activity generates the rebates and fees?
No rebates and lower drug prices are the best ideas. It seems to me that like rebates at the point of sale would be a better step in a move to a no rebate system for equitable reduction of rebate distortions. But any step to eliminating rebates is a step in the right direction IMHO.

Buried in here is something else to be concerned about. The PBM will get paid for managing care with a better spend. From Express Scripts press release:
Pay-for-performance for clinical and administrative plan management that improves patient and plan outcomes. Express Scripts will demonstrate, definitively, that it does not just buy better, but manages trend and spend better. Express Scripts' ability to deliver clinical and financial outcomes is directly tied to its compensation. Pay-for-performance means Express Scripts will take on more risk from clients, and be rewarded only when it delivers on agreed-to commitments. 
Is spend better, better care? Is it patient-focused care? It could be. It could also be more treat to failure restrictions. I have little confidence in middlemen working for patient-focused health-care. It didn't work for HMOs and PMB history isn't good. I could be wrong.

Stay tuned.


October 18, 2018

Of Adam, Appendixes, CGM, then AID in Hospitals

My friend Adam Brown just went through the maze of navigating blood glucose and a hospital stay. You can read about it in his post titled: My Appendix Ruptured: Scary Lessons Learned About Diabetes in the Hospital

Years ago my son had his appendix out. Like Adam, we were not willing to let the hospital manage his diabetes. Institutionally, they didn't like that idea. After all, had white coats. We prevailed. In the end, they were impressed. I came away convinced that PWD and their caregivers are WAY BETTER at insulin management than hospitals.

So did Adam.

I am in no way suggesting that hospitals, nurses, anesthesiologists, or surgeons don't know their stuff. They certainly know their stuff. I'm just saying that nothing like your diabetes is their stuff.

I wrote about our appendicitis adventure a post called, Poke a Finger on the Invisible Hand. I learned some lessons. While back then I prattled on about meter accuracy. I was fighting the current battle not the next.

Adam came away with a deep conviction that CGM is desperately needed for inpatient care. I agree with Adam. That is a battle to be won.

I think we need to go one step further. Adam spoke of needing to turn loop off for surgery.

Our experience was clinicians at the hospital were loquacious about insulin and had no real plan to administer it other than assuring us they had a sliding scale. That they couldn't answer what rates were in that scale gave us no comfort.

CGM is critical to better care. Full stop.

That includes those hopefully few times PWD are inpatient and under the knife.

I have seen academic presentations on the importance of managing post-op BG for non-PWDs. In fact, I spent a day in lofty, scholarly presentations on the matter. (I have had such adventures - you wouldn't believe.) Seems surgery is a shock to the system and high BG are a risk for complications, particularly infection. Not the kinda highs PWDs routinely see, by the way.

Bugs like sugar. Who'da guessed?

CGM isn't enough. The staff does not have the time or experience to manage diabetes' insulin needs even with CGM data. 

I think Automated Insulin Delivery is desperately needed in hospitals. OK, You are right to say, "Hey! Wait there isn't really automated insulin delivery other than DIY solutions in the wild."


But as systems come online, somebody needs to look at them for use in hospitals for T1s. Then T2 and finally for everyone who has had surgery and is a glucose risk.

Adam pointed out the horrifically inflated cost of finger sticks in his stay. He reports his appendix burst creating the need for infection care. But imagine the savings in those cases where infection could be minimized with automated BG control. Automating insulin could be a cost-effective driver of better post-operative care for some, maybe many.

In the meantime, better is better. If Adam Brown, possibly the most empowered patient in T1 history (or at least second to Kelly) cannot keep his automated insulin delivery system on in the hospital the rest of us are destined for trouble.