HealthTech First Responders
Andrew Rittler
CEO @ eVigils | Data Wrangler | Health Tech Innovator | Patient Advocate | Collaboration Architect
Health info at your fingertips
Let's start with an example of usable, high value medical information found in health apps we listed in the prior newsletter.
This week I received a Medscape push notification with information about long Covid. It's a condition that does not directly effect me or my family or any close acquaintances.
But long Covid impacts 17 million Americans (5% of the US population). That is the combined population of Arizona, Colorado, and Tennessee. I'm thinking at least one reader knows someone effected by long Covid.
The article reports on the emerging success of DCTs (decentralized clinical trials) in the treatment of long Covid. The what, who, and where of long Covid clinical trials - which a patient or caregiver or provider may find useful.
If long Covid does not impact your personal life, use a health information app to look into personally relevant condition. I have yet to come up short when searching either Epocrates or MedScape.
You can find more description and app store links in the last newsletter.
The Feds have [our] the patient's back
We all wonder, at times, where our tax dollars are being spent.
I recall sitting in the backseat of our car with my brothers in the late 1960s (no seat belts) and hearing my Dad's frustration when he encountered a deep pot hole, "d**n you Tate!" James Tate was the mayor of Philadelphia at the time.
Here are two places I see our tax dollars put to good use.
First, recognizing that I am my father's son, road construction is a visible aspect of our tax dollars. There's a lot of it going on. Once completed, it sure is nice. Enough said.
The second place I see tax dollars are put to good use is the US Department of Health and Human Services and, more specifically, by the ONC (The Office of the National Coordinator for Health IT).
Soon, if not already, you too will notice your tax dollars improving patient care.
ONC Part 1 - Healthtech First Responders
The ONC houses the experts and professionals who helped write The Cures Act and focus on making sure that data blocking ends and appropriate access to patient data is guaranteed for providers, organizations and even the patient/caregiver.
I mentioned this federal office in the past but last week I actually TALKED WITH THEM.
Government employees working on the front line of improving patient care.
I met with three ONC members; each primarily carried themselves as patient advocates (i.e. not policy wonks). I sensed advocacy in their comments, questions, and answers. You can even pick it up in their personal bios.
Here is an informative Q&A with Rachel Nelson, JD, MHA who is the Branch Chief of Compliance and Administration in the Regulatory & Policy Affairs Division, Office of Policy for the Office of the National Coordinator for Health IT in the US Department of Health & Human Services.
Whew - that's quite the job title. Rachel's Q&A clearly documented her expertise, focus and vision but they missed asking her preferred color or favorite Disney character.
Really interesting was the consistent thread in our conversation about reporting data blocking and the investigation process. More on that later.
Keeping the focus on health value
For perspective: 24% of the national budget is spent on healthcare while 13.3% is spent on national defense.
The Cures Act elimination of data blocking will improve the value of health spending as well as slow down the growth in spending.
My 30 year old daughter recently stated - not questioned - that Medicare will not be available for her. We discussed her thoughts and I mentioned The Cures Act and a few other perspectives, including the need for personal savings. She now has hope, wants to learn more, and is seeking out her patient data.
So, we the patients have that going for us, right?
Patient care improves with access to data
Back to money: think of the convenience, efficiencies, and protections we appreciate and expect as consumers; all enabled by The Electronic Fund Transfer Act (EFTA) of 1978.
Now to healthcare: as patients, care providers, and care organizations, we rely on The Cures Act legislation, operational in October 2022, to improve the movement of health data.
Just as a consumer reporting company (e.g. TransUnion, Equifax, Experian, Waystar, FICO, LexisNexis, etc.) serves the consumer and companies, so should a health data utility or HIE (Health Information Exchange) serve the patient, caregivers, and care organizations.
There are many independent HIEs throughout the United States. HIEs are sort of in the wild west of health technology but Civitas is a national association helping to construct roads thru the wilderness.
领英推荐
A past newsletter provides historical context regarding establishment, coverage, and the evolving business model of the HIE market.
Access to health clearinghouse data
These are the ten largest clearinghouses of community patient information, ranked by number of patients that consented to storing their data:
source: Civitas Networks for Health
These ten HIEs, combined, gather patient data on 175.5 million people, or 52% of the US population.
What is the HIE that serves your area? Here is one source of HIE coverage. My locale, Middle Tennessee, does not have an HIE or health data utility. That's a story for another time.
Now this is interesting ... a quick review of the ten organizations' websites does not indicate how a patient can request access to their care information. One HIE clearly states they do not provide a patient access to their data.
On the other hand, the Delaware HIE provides a mobile app for patients.
The Cures Act The rule is designed to give patients and their healthcare providers secure access to health information. It also aims to increase innovation and competition by fostering an ecosystem of new applications to provide patients with more choices in their healthcare.
I guess, for now, a patient could send an email the HIE's help desk.
ONC Part 2 - Healthtech First Enforcers
But who uses just email these days? There's an app for that, right?
My contacts at the ONC - and every data blocking webpage published by ONC/healthit.gov - stress the preference for data blocking claims be submitted to the OIG website for investigation. And, the OIG is prepared to assess fines for violations.
The claims, to date, are numerous and primarily submitted by patients/consumers. This is a summary by Claimant for the last 9 months as of this posting date:
65% of the claims are made by a patient
93% passed initial OIG review / appear to be potential data blocking
Theses numbers are exactly what the ONC is aiming for; that is, getting the patient fully engaged in their care - similar to our engagement in financial matters.
The ONC sees the patient as a key missing piece to increasing value in healthcare and slowing the rate of health spending.
Earlier I mentioned fines. Yes, fines. Fines can be assessed to Actors (technology firms, HIEs and providers) who are found in violation of data blocking under The Cures Act legislation. The fines are steep and potentially higher than HIPAA fines.
But, alas, kind reader, I regret to inform there is no whistleblower statute for The Cures Act. However, there is anonymity. The claimant can choose to provide their contact details (to receive updates on the investigation), or not. Either way, Cures Act claims fall outside the FOIA (Freedom of Information Act) and anonymity is guaranteed.
What is driving this change in patient care?
The free flow of patient information (ensured by The Cures Act) is one of the three critical success factors for CMS to achieve its 2030 goals for Medicare and Medicaid, which include a shift to value-based payment arrangements with care organizations and providers.
The other two critical factors are education of patients and providers, and, regulation flexibility (a.k.a. applying current laws and creating new as the market dictates).
This means, we the patient, the caregiver, and care organizations have a lot to learn about access to patient care data which impacts the quality and speed and cost of care decisions.
PS - Newsletter name updated
Updated the newsletter title to "We the Patients ..." - alluding to the opening of the U.S. Constitution - to reflect the feedback coming in about patient engagement, patient rights, patient needs and how "it's all about the patient, right?"
A US Senator recently said, "America was founded on brilliant ideas ... But America is not just an idea. It is a group of people with a shared history and a common future."
I will keep my company and its services focused on The Patient as a person, not an idea, and the patient's shared needs and common future.
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