T.P. Caruso & Associates

Envisioning a digital infrastructure for a Learning Health System

Archives for Think Tanks

Models of Leadership in Academia

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After almost 20 years of watching academic leaders build and manage research programs, I categorize all leadership approaches into one of two models:

  • Departmental leadership
  • Principle investigator leadership

Departmental leadership stems from base funding that provides for core faculty positions.  Not only departments have this type of funding, but also many other organizational structures, and notably research centers with some longevity that has allowed them to develop such base funding.  With this type of funding the departmental leader can build an organization that fits with a particular mission.  If the mission is to create an organization that contributes to innovative research and education in bioinformatics, then the departmental leader has some leeway to hire core faculty in bioinformatics.  Typically the departmental leader will shape the specifics of the mission to their own perspectives gained from their past education, research and service.  Sticking with the bioinformatics example, the departmental leader may decide to focus on structural or systems biology because they have particular interest in this area and recognize this is an area with much research potential in the future since it may be clear that funding agencies are prioritizing the importance of these fields.  The area may also be one in which students increasingly have the aptitude and interest in pursuing.  Maybe most important, the departmental leader may recognize that many of the resources that are available to support the development of this area are already on campus.  The bioinformatics program needs resources on campus that have the potential to produce the biological data that can be analyzed, or a systems biology effort would require campus resources that provide mathematics and computer science expertise to collaborate in the development of the research programs of the core faculty.

Departmental leadership is most effective when developing an existing organization.  By promoting the mission of this organization, the departmental leader increases the amount of funds for supporting core faculty, builds the reputation of the organization, and supports the education of future leaders according to the mission.  The departmental leader is most effective when their primary function is in motivating existing faculty to support the mission and succeed at their own personal missions for education, research and service.  Their ability to move the organization towards a reputation in a particular discipline is dependent upon their ability to gain a consensus among the faculty about the mission of the organization, and then to obtain that mission through faculty recruiting and the support of the faculties efforts in education, research and service.

Principle investigator leadership stems from a mission based on subject matter expertise and the funding that expertise attracts.  This seems to be the most effective model for leadership in developing new education, research and service initiatives.  In these cases, the principle investigator leader is the thought leader who takes ownership of an initiative.  In many cases this principle investigator leader is hired from outside the institution to build the initiative, but that isn’t always the strongest strategy, particularly when the success of the initiative depends in large part on the existing resources of the institution.  The principle investigator leader usually has an appointment as professor, and is rarely also the administrative head of a department, division, school, or college.  In cases where the principle investigator leader is an administrator, they are usually administrators of research.  This individual must have a reputation in the area that is being developed.  The stronger the reputation, the more successful the initiative.  A major component of the mission of the initiative will be in-line with this reputation and the principle investigator leader will lead many projects that could be considered “core” projects of the initiative.  Other faculty affiliated with the initiative are collaborators on grants and contracts, or full-time research faculty frequently funded by the grants or contracts.  These faculty usually will have some close connection to the leader’s area of interest, though they may be completely peripheral in that interest, being maybe focused on an area that was spun off from the principle investigator’s original efforts.  Faculty in these organizations will initiate their relationship to the young initiative through collaborations or full-time roles on initiative-funded projects, and then develop their own, though related interests, obtaining funding for them to establish their own role as a principle investigator in the initiative.

Initiatives with longevity are composed of faculty affiliates and core faculty who have varying degrees of connection to the research of the leader, with the initiative held together by a mission and frequently one or two large “core” grants or gifts.  These initiatives require the skills of a department leader, so either the original leader assumes this role by moving away from their function as key grant and contract principle investigator, or the individual focuses on continuing to build their own education, research and service activities and turns over the organization administration to a newly appointed individual with department leadership skills.

Filed under Think Tanks
Jul 25, 2012

No PHI

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A health information cloud (HICloud) doesn’t need Protected Health Information (PHI) to support health information exchange.  You can keep PHI private and locked away in your private, secure databases.  Then you can use a portion of that PHI (e.g. First Name, Last Name, Birth Date and Last Four Digits of Social Security Number), if you are authorized, or you can input your own PHI with a password, to get all the health information that is in the cloud.

Such a HICloud is highly secure from abuse by individuals who want to link health information to PHI, for insurance purposes or employment evaluation, etc., because the PHI is not there to be found linked to anything.  You have to provide the PHI to make the link, but more importantly, even with the PHI (so you know Name, Birth Date and Last Four Digits of SSN) you still have to be authorized to be receiving information from any PHI you might enter.   You can’t find everyone with a particular symptom, nor can you find everyone who lives in a particular place of a certain age, and you can’t associate that information with health information because that identifying information is not in the HICloud.

A few challenges arise from such HICloud, but they are surmountable.  For instance, date-related information is needed for proper aggregation of health information, but using relative information such as a stamp that indicates that a particular “chunk” of health information created today was created 20 days after the previous chunk of health information.  Age information can be hidden within categories like 0-4, 5-9, 10-14…older than 80.

The biggest challenge is the use case in which a care provider needs to get health information about an unconscious individual who needs emergency health intervention.   If the individual has the necessary PHI on their person, then there is no problem, but what if all that is known about the individual is where they live, how tall they are, the color of their hair, and the location of a birthmark.  A service could be provided, on a separate system, not directly connected to the HICloud, that allows emergency medical personnel to do searches for PHI.  When the PHI is thought to be found, special authorization could be provided to use that PHI to aggregate that individual’s health information from HICloud.

Secure and privately maintained PHRs, EHRs, and EMRs can contain the necessary PHI for accessing all the health information in the HICloud, but only those with official authorization from the individual who owns the PHI.  Even access to deidentified information about each individual requires a consent from that individual, in case that individual feels insecure sharing even deidentified information.

Such a capability makes sense and is possible.  Furthermore, it makes health information exchange much easier that through a network of health information exchanges, and it provides a means of paying for the costs of the health information storage and health information exchange since those with authorized access to the consented deidentified information can be paying for that access.  Furthermore, a portion of the funds received from organizations searching the consented deidentified information can flow back to the individual providing that information as a further incentive for sharing.   Entire business models can be built around payment for access, health information exchange, and individual consent.

What’s holding us back from building a HICloud that contains NO PHI?

Filed under Think Tanks
Sep 15, 2011

Let’s Think Different

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I wonder whether the author of the Healthcare Technology News blog post called “Think Differently – the sequel” thinks that the ONC and their PCAST Workgroup is actually “Thinking Differently”?  Though it was a good summary of the PCAST HIT Report and the PCAST Workgroup Report released in mid-April, the blog suggested this was thinking differently.  Would Steve Jobs (Mr. Think Differently) say that they are thinking differently?  I think not.  Certainly PCAST thought differently when they published their treatise about health information exchange; however, the ONC and its delegates in the HIT Policy Committee are constrained by legacy thinking.  How do we best go from where we are now to there?  That’s legacy thinking and that’s what ONC is doing with the PCAST Health IT Report.

The Biomedical Informatics Think Tank™ thinks differently: that knowing where we are going does not require knowledge of where we are, but only what we want to be able to do with this new exchange architecture.  We are conceiving a technology that will create a Health Data Cloud (see my latest blogs: Why Build a Health Data Cloud and A Health Data Cloud is a Powerful Tool for Health Research), which will attain the objectives set out in the PCAST Health IT Report: Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward:

  1. “Every American will have electronic health records and will have the ability to exercise privacy preferences for how those records are accessed, consistent with law and policy.
  2. Subject to privacy and security rules, a clinician will be able to view all patient data that is available and necessary for treatment. The data will be available across organizational boundaries.
  3. Subject to privacy and security rules, authorized researchers and public health officials will be able to leverage patient data in order to perform multi-patient, multi-entity analyses.”

The technology will be based in the latest thinking with a mathematical foundation for medical semantics, privacy and security in a cloud, social networks that empower individuals, and health ontology.  We start our thinking with what we want and think about the best way to meet those needs with technology that will serve us for a long time into the future.  That thinking is not constrained by current ideas about EHRs and time frames to get new technology standards implemented, a clear constraint of the Health IT Policy Committee’s PCAST Workgroup.  We will be part of a transformation health information exchange through our efforts, just as Apple has been part of the transformation of personal computing since the 70′s.  We think differently, and we invite you to think differently with us.

Here’s some different thinking: ONC should invest in a major effort, exceeding the scale of The Human Genome Project (HGP), to define a New Exchange Architecture with a Universal Exchange Language, and then they can actually build and manage the Health Data Cloud that will be required.  This is just as important as the HGP, and in fact, a continuation of the personalized medicine movement that is partially driven by the results of the HGP.  The HGP cost taxpayers $2.7 billion (HGP Frequently Asked Questions, Oct 2010) and much more was contributed by international government agencies from the UK and other countries, as well as by private and non-profit organizations towards this same goal.  HITECH put ten times this amount, $27 billion into motivating healthcare providers to move into the 21st century of health IT and electronic health record technology.  Only 10% of this funding could transform with a New Exchange Architecture.

Let’s think differently!

Filed under CER, New Exchange Architecture, ONC, PCORI, Think Tanks
Jun 30, 2011

A Health Data Cloud is Powerful Tool for Health Research

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The current effort to bring electronic health record use to healthcare providers, presently funded by the HITECH Act at a level of $27 billion will create hundreds of thousands of silos, one for each provider organization.  Some similarities and substantial compatibility will be seen by those who share one of the hundreds of possible electronic health record systems.  Each of these silos will use their own standards, as long as they have the standard functionality to meet requirements set by the Office of the National Coordinator (ONC) of Health Information Technology in the Meaningful Use Stage 1 through Stage 3 specifications.  One of these requirements will be to provide interoperability with the Nationwide Health Information Network (NwHIN) specifically for providing “Transition of Care” functionality.  Efforts will also be made to create requirements that increase the ability to do research on the healthcare information across the silos.

This strategy is likely to enhance the sharing of information among providers, but not without large challenges.  Certainly research will also be enhanced once data sharing agreements can be established for use of the healthcare information in the network, and more importantly, once language standards are established so, for instance, an MI in one system is understood as a Myocardial Infarction in all systems.  Implementation of language standards has not even been discussed by the ONC’s Health Standards Committee except to say, with the urging of Chris Chute, a leading proponent of this standardization effort, that a language will be a component of the requirements of Meaningful Use.


The President’s Council of Advisers for Science and Technology (PCAST) in their Health IT Report titled “Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward” released in December 2010, recommended a novel approach to health information exchange which would require metadata tagging of atomic data elements that they called a Universal Exchange Language.  The Biomedical Informatics Think Tank(tm)(BITT(tm)) interprets this approach as a Health Data Cloud where all healthcare providers and individuals can store their health information.  Key to this proposal is that only those individuals, providers and researchers authorized to see this information can aggregate it for their use.  The Health Data Cloud could enforce the use of standards since when information is put into the cloud, it the information could be checked to ensure that it meets standard requirements.  Such a New Exchange Architecture would make access to the health information less costly and more able to provide results that could allow an effective implementation of comparative effectiveness research and personalized medicine.  Furthermore critical public health information could be easily monitored for disease outbreaks.  This access could be provided while maintaining the privacy of individual health information.

The BITT has a demonstration of just such technology, which it plans to license as open source.  Some of the interesting characteristics of this technology include:

  1. Individual identifiers can not be downloaded from the system in association with any data (i.e. no identifiers are available external to the code of the system).
  2. Access is provided to proxies, providers or researchers through online authorization (consenting) mechanisms (and thus, individual identifiers are not necessary).
  3. Researchers can do research on any of the information as long as the results they see are only aggregates.
  4. Researchers can only see individual deidentified data (and never identified data) for research purposes only if the providing individual (or their proxy) has given consent for that purpose.
  5. Researchers can notify an individual’s care provider about a healthcare opportunity resulting from a research effort (such as an opportunity to participate in a clinical trial or to follow a particular regime or get a particular procedure done) only through an notification service that keeps the patient identification information unknown to the researcher.

Stay tuned for the latest updates about this proposal for a Health Data Cloud.  If you would like to have a copy of the code, please contact me and we will provide you with this as soon as we can make it available because we want your help in the development of this code as open source.

The Biomedical Informatics Think Tank(tm) and BITT(tm) are trademarks of T.P. Caruso & Associates, LLC.

Filed under Biomedical IT, CER, New Exchange Architecture, ONC, Think Tanks
Jun 26, 2011

The “How” Answer to the “Why-How-What” Question that All Businesses Must Ask Themselves

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Triggered by the book Start with Why by Simon Sinek few weeks ago, I wrote the blog titled Changing Healthcare One BITT(tm) at a Time about WHY the Biomedical Informatics Think Tank(tm) exists: to contribute to the building of a digital infrastructure that supports the Learning Health System as defined by the Institute of Medicine.  The question here is HOW the BITT will attain this objective:

  • BITT will produce content that reflects the expertise and creative ideas of its academic members, promoting their ability to contribute to a New Exchange Architecture (see Content Intentions);
  • BITT will create innovative solutions that provide novel approaches to health information management which insures personal health information privacy and allows ease of health information access by authorized individuals;
  • BITT will recruit the leading thinkers in academia as members to develop and test these innovative solutions, continuously driving the technology forward;
  • BITT will partner with the academic institutions of its members to leverage their exceptional intellectual manpower, advanced facilities, and close ties to medical centers who might pilot the innovative solutions;
  • BITT will partner with private institutions, both for-profit and not-for-profit, to find the most effective means of implementing these innovative solutions;
  • BITT will obtain funding through a wide array of vehicles and from both public and private sources, providing consulting to organizations that benefit from BITT expertise and resources, obtaining government grants and contracts for developing various innovative projects and pilots, spinning-off non-profits to support the infrastructure required to provide the innovative solutions, and investing in businesses that develop applications which use this infrastructure; and
  • BITT will reward independence of its workforce and partners who strive to establish attainable goals that transforms the health information management infrastructure.

If we implement BITT as proposed above, BITT will be successful because its members, academic and non-academic partners, employees, and sponsors will all benefit by advancing their careers or missions, and by unquestionably being part of a transformation of the modern health system.

The Biomedical Informatics Think Tank(tm) and BITT(tm) are trademarks of T.P. Caruso & Associates, LLC.

Filed under Biomedical IT, Think Tanks
Jun 19, 2011

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