Your thoughts for Friday's Patient Engagement panel @DiabetesMine Summit #dbminesummit

Diabetes Advocacy Public Advocacy
#1

Dear all,
This coming Friday, I will participate in a panel moderated by Kelly Close at the DiabetesMine Innovation Summit:

Here are a few questions, we've been asked to ponder about. I wanted to gather insights from the members of the community to share within the panel.

1. How do you think payers can best "engage " patients in your own diabetes care?

  • Best case example(s):
  • Worst case example(s):
  • Your dream/wish list for payer-patient engagement:
  • Other comments:

2. How is FDA doing with its efforts to "engage" patients?

  • Best case example(s):
  • Worst case example(s):
  • Your dream/wish list for FDA-patient engagement:
  • Other comments:

3. How would you want your doctor/healthcare team to best "engage you" in your own diabetes care?

  • Best case example(s):
  • Worst case example(s):
  • Your dream/wish list for HCP-patient engagement:
  • Other comments:

4. How could your hospital / clinic better motivate and communicate with you?

  • Best case example(s):
  • Worst case example(s):
  • Your dream/wish list for clinic-patient communication:
  • Other comments:

5. How do you think large pharma/medical device companies can best "engage" patients in their own diabetes care broadly speaking? Do you have specific examples?

  • Best case example(s):
  • Worst case example(s):
  • Your dream/wish list for company-patient engagement and feedback:
  • Other comments:
#2

My suggestion: Turn each question around: "How would you like to engage the medical community in your care?" I don't think of myself as a patient, but as a "Consumer" (of medical services). In this I take my clue from the Recovery Model in Mental Health where Consumers are empowered to be in charge of their own care.

#3

1. How do you think payers can best "engage " patients in your own diabetes care?

I think that this is a civil rights issue that should be phrased as such. I've run into restrictions and received letters from BCBS "Medicare says you need 4 strips/ day, so that's all we owe you..." but, when pressed, they have caved in. I should not need to spend my time pressing them. The way to go after "grey-market" sellers selling extra strips on Ebay is to...go after grey-market sellers. It seems very reasonable to contend that we should be allowed to know what our BG is as tracking that data (ha ha, ok, I still don't write much down...) is very important to our overall health and to improving our ability to take care of ourselves. I would like to see health insurers including Medicaid/ Medicare recognize this as a proven, scientific fact.

2. How is FDA doing with its efforts to "engage" patients?

Other comments: It was nice of them to talk to us. It is not nice that products which are proven and available in "civilized" countries (e.g. the Animas Vibe system...) are witheld from the US market because of bureacracy. Perhaps there's an invisible hand operating there as the US also has a stronger plaintiff's bar protecting consumers from mishaps. Perhaps a simple way to regulate the "safety concerns" underlying FDA involvement might be to employ actuarial science to calculate the risk. Johnson & Johnson (the maker of Animas...) should be allowed to make an actuarial case that the risk of their system is what it is and then the number "ok, so far the Vibe has killed ____ people" and, if the number is acceptable, well, they should put it through. A corollary would be that if an actuarial risk can be calculated, it can be underwritten in which case a manufacturer could simply include their cost for insuring the calculated risk into the cost of their unit. It's absolutely horrible that there is risk associated with our devices but, well, that's why we're so damn tough. If the value of a dead PWD is c. $8-9 million (the Seattle case...), the manufacturers can insure pump mishaps.
3-4 How would you want your doctor/healthcare team to best "engage you" in your own diabetes care? and How could your hospital / clinic better motivate and communicate with you?

I'd like to see doctors pay attention. I mostly go to the doc and get patted on the head. I get very little concrete advice and, at this stage of my life (47), I have very low expectations out of my $800-1200 per year. I'm so numb to the possibility of helpful medical advice that this is a hard question for me to answer. I like my docs pretty well (although endo is a bit shaky right now...long story...) but feel a bit shortchanged by most of them. I like my GP very well but even there, he just goes "keep on doing what you're doing..."

5. How do you think large pharma/medical device companies can best "engage" patients in their own diabetes care broadly speaking? Do you have specific examples?
I am very happy with what I get from Medtronic. I would like to know more about their efforts to fight FDA delays as I mentioned above.

#4

1. How do you think payers can best "engage " patients in your own diabetes care?
Diabetes is a life-long chronic condition. As patients, we feel frustrated by having a payer making what are essentially medical decisions about us, especially when they seem based on short-term costs rather than long-term outcomes or quality of life.
Don’t make us buy cheap meters and strips which barely work, don’t deny us important care which has a long-term benefits but few immediately observable short-term benefits. And don’t make us justify our need for diabetes care and treatment every time we order new supplies. None of us suddenly got cured.
Please use your buying power to allow us to get better deals on treatments but don’t negotiate “preferred” decisions based simply on negotiated deals, that takes away patient choice. Involve patients in the development of policies. Ask patients about appropriate goals for treatments so that studies of efficacy in a clinical study setting translate to patient outcomes. Allow access to more expensive/effective modes of treatment with the understanding that the patient is responsible for success. For instance insulin pump’s/CGMs are generally denied to T2 patients unless they demonstrate really, really poor control. Are these the patients who will actually obtain the biggest benefit? Should insulin pumps/CGMs be given to patients who most effectively use them to improve their outcomes?

2. How is FDA doing with its efforts to "engage" patients?
The FDA is doing better listening to patients. There are still key deficiencies that result in products on the market that are inferior, don’t meet original approval standards and for which there remain very serious safety concerns. The FDA is still trying to understand how quality of life issues matter, why patients may achieve markedly better self-care and resulting outcomes because of these issues. Few of the equities advising the approval process understand these and just because some drug is better than nothing (a placebo) doesn’t mean that in practice it will lead to any benefit to the patient.

3. How would you want your doctor/healthcare team to best "engage you" in your own diabetes care?
90% of people with diabetes have Type 2. Patients with T2 are often poorly treated and misunderstood by the HCP. Most T2s get care from their GPs who themselves may have perhaps only a day or so of medical education related to diabetes. The standards of care are oriented around treatment to failure, guiding the patient through a medicalized solution to their condition that generally accelerates the progression of their condition and results in poor long term outcomes.
Key deficiencies today are that most HCP interactions spend the majority of time negotiating access to obvious necessitates (prescriptions and devices). Education is lacking, aside from education for newly diagnosed patients there is almost nothing and there isn’t education of the vast network of HCP which flail around with minimal understanding of diabetes and in some cases total misconceptions. And HCP need a better understanding of the importance of the mental toll diabetes has on patients, good self-care today is 90% mental.

4. How could your hospital / clinic better motivate and communicate with you?
Patients need a central place that they can have “health integration.” They need advocates who can bring members of a healthcare team together to appropriate share information and collaborate.
5. How do you think large pharma/medical device companies can best "engage" patients in their own diabetes care broadly speaking? Do you have specific examples?
They could be fully transparent about the studies that demonstrate safety and efficacy of treatments. They could work with patients more closely as an ally in performing studies. They could be more aggressive about partnering with patients for post marketing surveillance of treatments.

#5

I am newly diagnosed LADA, and already feel strongly that diagnosis and treatment protocols need to be developed. Need everyone to know that assumptions are not diagnoses. (e.g., weight, age do not determine type). I do not have a manifesto :)