By VINCE KURAITIS, JD
The PCAST Report on Health IT has become a political piñata.
Early Feedback on PCAST
Like many of my colleagues, I was taken aback by the release of the Report in early December 2010 — I didn’t know quite what to make of it. Response in the first week of release after Report was:
- Limited. The first commentaries were primarily by technical and/or clinical bloggers. The mainstream HIT world had remarkably little initial reaction to the Report.
- Respectful of the imprimatur of “The President’s” Report and noting some of the big names associated with the report (e.g., Google’s Eric Schmidt and Microsoft’s Craig Mundie.)
- Focused on technical and/or clinical perspectives around two broad themes.
- The vision is on target: “extraordinary”, “breathtakingly innovative”.
- These guys didn’t do all their technical homework. The range varies, but the message is consistent.
Today’s POV on PCAST
What a difference a six weeks makes.
The Office of the National Coordinator for Health IT (ONC) requested comments on the Report. The comments were due by January 19 and a number of influential organizations have already made their comments public.
After having read 10 early commentaries submitted to ONC, I’ll (admittedly subjectively) divide them into 3 schools of thought:
1) PCAST is a frontal attack on mainstream clinical, technical, and economic stakeholders in existing U.S. health IT. While there are some good ideas in the report, almost all of them are already in the works. Bury PCAST ASAP.
- HIMSS (Healthcare Information and Management Systems Society)
- EHRA (HIMSS Electronic Health Record Association)
- AHA (American Hospital Association)
- FAH (Federation of American Hospitals)
- RSNA/ACR (The Radiological Society of North America/American College of Radiology)
- IHE (Integrating the Healthcare Enterprise USA)
2) PCAST has some great ideas that rapidly deserve deliberation and testing.
- CDT (The Center for Democracy in Technology)
- Project HealthDesign
- Markle (The Markle Foundation)
- CGC (The Clinical Groupware Collaborative)
3) Full speed ahead on PCAST recommendations. Rip ‘n replace.
- Nobody
Note: this list represents organizations that have chosen to make their commentary public through press releases, emails and/or tweets. ONC will eventually make all the submitted comments public — and there could be dozens or hundreds of commenting individuals and organizations. Thus, the list isn’t necessarily representative of all commenters, but it certainly represents some heavy hitters.
For each of the organizations listed above, I’ve selected representative excerpts from comments submitted to ONC.
HIMSS
(Healthcare Information and Management Systems Society)
In commenting on the PCAST Report, we would like to work with HHS/ONC regarding PCAST’s assertion that rapid progress can only be made through technology choices that open up markets to competition and innovation. And, the Report’s assertion that this goal requires a new universal exchange language for healthcare information, as well as a new digital infrastructure for locating patient records while strictly ensuring patient privacy.
…over the past decade, the health IT community has been working collaboratively and diligently on a number of standards-based approaches that support health information exchange within provider organizations and across provider organizations…
Overall, we believe that the specific approach called for by PCAST poses substantial and entirely unwarranted patient safety risks.
…we believe that the PCAST approach could lead to substantial and negative disruptions that will impose clinical and financial costs that are not offset by reasonably foreseeable benefits.
The PCAST report’s critique of EHRs as being primarily billing focused is hopelessly out-of–date.
EHRA (HIMSS Electronic Health Record Association)
We wish to emphasize strongly that virtually all PCAST use cases and specific technical requirements (e.g., the use of meta?tagged, searchable and indexable XML) can be met with existing and emerging standards, particularly those developed by HL7, IHE, and such controlled vocabularies as ICD?10, SNOMED, and LOINC.
We do, however, have serious reservations with the PCAST assertion that the central element of a universal exchange language for healthcare information must be meta?tagged individual data elements. In contrast, we believe it much more appropriate to focus on a “document” or record?centric approach to healthcare information, as used in the HL7 CDA documents…
We believe that PCAST’s proposal to manage clinical data and security at the individual data element level, with an unprecedented and highly granular privacy management scheme, is unworkable.
We also believe that the PCAST recommendations could lead to substantial negative disruptions that could impose clinical risks and additional costs that are not offset by foreseeable benefits.
Adopting the specifics of the PCAST proposals for Stage 2, even if they were warranted on their face, is simply unrealistic.
AHA (American Hospital Association)
While the PCAST report provides a vision for the future state, it also raises significant concerns and questions that must be addressed.
The timeline implied by the report and repeated in the RFI – that this could be part of Stage 2 meaningful use – is unrealistic and would result in halting national progress toward implementation of EHR technology.
Such a plan cannot be developed in a rushed manner with artificial deadlines.
The AHA strongly recommends against integrating the recommendations of the PCAST into Stage 2 of meaningful use.
FAH (Federation of American Hospitals)
While the vision laid out in our white paper two years ago appears to be in alignment with the broad vision of the PCAST report…A change in policy direction at this stage… has the potential to set the nation’s health care system back, rather than to move us forward, in terms of interoperability, adoption and use of health IT. Therefore, the FAH strongly recommends that the ONC work to harmonize the Report’s intent with the current work of the HIT Policy and Standards Committees.
We are also concerned that the Report does not sufficiently recognize the challenges that will be associated with tagging every piece of data in every medical record across all patients.
RSNA/ACR (The Radiological Society of North America/American College of Radiology)
…currently established standards that describe metadata at the document and object level are sufficient to expand the exchange of health data and demonstrate its usefulness in improving patient care and research. Current standards, such as those defined by DICOM, HL7, Oasis and W3C; medical terminologies and coded value sets like LOINC, SNOMED, CPT and RadLex; and implementation guides like those published by IHE and the Health Information Technology Standards Panel (HITSP) are sufficient to establish effective exchange of medical information to support improved efficiency and quality of care.
Any work toward the PCAST-envisioned “universal exchange language” should be based upon established standards and terminologies and should be viewed neither as a de novo effort, nor as preliminary to establishing effective health data exchange.
IHE (Integrating the Healthcare Enterprise USA)
…we believe the goals of ONC and broad recommendations from the PCAST report can be implemented using established standards and implementation guides, including those specified in IHE profiles.
Enabling market-driven approaches has been effective in stimulating innovation in other industries. Establishing and implementing standards necessary to interoperability should be accomplished through a process led cooperatively by users and industry.
The changes envisioned in the PCAST report should be implemented incrementally and should not be allowed to have a disruptive impact on current programs for health information exchange.
CDT (The Center for Democracy in Technology)
The PCAST report makes sweeping technical recommendations, but leaves a number of important policy questions unanswered. CDT’s comments urged HHS to let policy goals guide technology choices – not the other way around.
As CDT has stated in the past, overreliance on patient or consumer consent is ultimately bad for privacy. This is especially true at the granular level contemplated in the PCAST report.
PCAST’s proposed DEAS also faces some practical challenges. The PCAST report appears to give DEAS users automatic access to data if the users have the appropriate role and authentication credentials (and their access is not blocked by patient privacy permissions). Yet, health care institutions are unlikely to be comfortable automatically sharing data with uses that they don’t necessarily know or trust.
…even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.
Markle (The Markle Foundation)
We share PCAST‘s sense of urgency to catalyze broad-scale implementation of health information technology to transform health care.
However, we also identify areas for further development and analysis based on our experience with three foundational principles.
A. Adopt a trust framework based on Fair Information Practices (FIPs).
B. Protect privacy while enabling greater information sharing through simple, progressive steps using well-tested standards and technology.
C. Focus on rapid learning and better decision making by many.
Recommendations
CGC (The Clinical Groupware Collaborative)
Our members applaud the report’s direction and efforts to increase the benefits available through appropriate uses of health IT to the U.S. healthcare system.
To the extent that this project can lead the industry towards a ‘healthcare Esperanto’ aka a universal healthcare data exchange language (UHDEL) that enables two healthcare parties to accurately and easily communicate without the need for prior point-to-point negotiation, it will have performed an invaluable service for United States healthcare.
However, we don’t believe it is necessary for the government to encourage any entirely new health care XML variant.…We would suggest ONC begin by taking a serious look at the current production-ready XML solutions in the market, and review the recent research related to both XML and semantic interoperability, as a first step in moving toward the goals of the PCAST report.
(Disclosure: I am a Board member and consultant to the CGC and assisted in editing the CGC’s comments.)
Vince Kuraitis JD, MBA is a health care consultant and primary author of the e-CareManagement blog where this post first appeared.
Categories: Uncategorized
David Harlow’s comments are particularly important given that the patient voice hasn’t been heard in any meaningful way in the conversation about EMR, HIT, or any of the rest of the alphabet soup.
As a communication expert, and a patient, I find the lack of connection between providers & patients to be worse than ever in recent history. And I’ve been around for a few decades, so my definition of “recent” goes back a while.
The blizzard of acronyms in the HIT space doesn’t help – patients without the determination of a CIA analyst, or at least Miss Marple, get exhausted trying to find out how HIT will hit them, and often quit trying before they make an real progress.
Until patients are recognized as the entire purpose of the exercise, and not just another data point, no permanent, meaningful change will occur.
Vince —
I’d like to add to your inventory of comments on the PCAST report the comments of the Society for Participatory Medicine, representing patients, clinicians and non-professional caregivers, and focused on networked patients shifting from being mere passengers to responsible drivers of their health, and providers who encourage and value them as full partners.
The comment letter may be read in full here:
http://j.mp/S4PM-PCASTcomments
Here is a key excerpt:
As empowered, engaged patients we want clinical aggregation of our health care data to be done with us, not to us. The best way to do that is to give us the opportunity to aggregate our own health data first. Specifically, the Society’s position is that each and every patient must have full rights to his or her health information, as peers on any health information network. We recognize that this goal may not be immediately achievable in its entirety, but elements of this goal may be achieved over time. (These elements are set forth below in order of difficulty, beginning with the easiest to achieve.) In the long run, each patient should have the right, and the easily exercised ability, to
1. Access all of their own health data. (The right to receive data)
2. Share information in the record with other individuals or organizations, privately or publicly, as the patient sees fit. (The right to send freely)
3. Aggregate data in a meaningful way from multiple sources (e.g., multiple physicians, clinical labs, imaging centers), before anyone else does, or at least as soon as anyone else does. (The right to aggregate)
4. Flag errors and add comments, and have comments acknowledged even if not “accepted”, in an automated and trackable fashion. (The right to correct data)
The Society is technology agnostic. For purposes of this discussion, our key comment, and our goal for the national HIT infrastructure, is that every patient must be a full peer on the health information network. Based on the technology that is currently available and in development, this goal is achievable now. We do not see PCAST as embracing this goal in its report, and we believe that failure to do so represents at best a lost opportunity, and at worst a trampling of patients’ rights. The vision of the future as articulated by PCAST retains a view of the patient as the subject of care, not as a participant in his or her own care. While there is certainly a place for medical experts and expert systems, the central role of the patient in directing his or her care, in shared medical decision making, must be formalized in our national health information exchange strategy.
For more on the Society and its work, please see http://participatorymedicine.org.
Thanks, Vince. This is a great review.
I must admit that I haven’t seen any of these comments before submitting mine. I feel better now…. 🙂