PCEHR-ClinicianWorkflow

PCEHR Clinician Workflow
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(Initial comments on Sections 2.3/2.5/2.8.1 of Concepts of Operations document - A/Prof. Terry Hannan)

In responding to the Concept Of Operations document from NEHTA my comments are set against the background of using the following criteria for a large, disseminated, communicating e-Health system (that includes a ‘conceptual’ PCEHR) which meets the requirements for individual, local, regional, State and national health care delivery systems. These criteria have been defined from the knowledge and experience of successful and evolving e-Health systems on the international stage.

__ Criteria. __


 * 1) Collaboration: a successful e-health system must developed openly and be built on a common infrastructure, the sharing of the ‘best-of-breed’ modules that can occur within a shared infrastructure.
 * 2) Scalability: the infrastructure must not only handle thousands of patients and hundreds of thousands of observations, but be also scalable to tens of thousands of patients and millions of observations.
 * 3) Flexibility: these systems must be able to support all clinical care states and their ancillary support systems.
 * 4) Rapid form design: data collection in clinical care is a moving target, therefore form design and deployment must allow for continual change.
 * 5) Clinically useful: the feedback of information (in particular with Clinical Decision Support tools) to providers and caregivers is critical. //So if the system is not clinically useful it will not be used//.
 * 6) Use of standards: these permit maximum flexibility and extensibility of the system.
 * 7) Support high quality research: via non ambiguous coded data primarily captured during the care process.
 * 8) Web based support for intermittent connections: this allows for e-Health information management in communities where there are unreliable power supplies and interrupted internet connections. Internet based technologies also facilitate scalability.
 * 9) Low cost: these systems to have wide availability they must be adaptable to all social scenarios and cost must not inhibit adoption //(“the essential technology for health care”-Institute Of Medicine 1991//). Where possible the ‘nuts and bolts’ of the system should be downloadable free.

**// Section 2.3 Page 22-23 of COP: //** In order to deliver this vision, the PCEHR System __will provide__: – Clinical documents such as Discharge Summaries, Event Summaries and other documents over time (e.g. Pathology Result Reports, Specialist Letters, etc).
 * Secure access for individuals and their healthcare providers to their eHealth records via a range of access channels.
 * A national set of services that will allow streamlined access to eHealth records, drawn from multiple repositories, such as: – A Shared Health Summary including allergies/adverse reactions, medicines, medical history and immunisations.
 * Governance, legislation and oversight to ensure trust and confidence in the PCEHR System.
 * The national standards, planning and core national infrastructure required to use the PCEHR System.
 * In defining what the PCEHR System is intended to be, it is also important to define what it is not intended to be. The PCEHR System is intended to be:

– //Non-mandatory// — participation by individuals will be voluntary. (TH) This is an important option because there are __those in the community__ that who, no matter what evidence is provided showing that EMRs are good for care, will be fundamentally against sharing any of their information with anybody at any time for any reason. This would indicate that by accepting the opt-out option for any EMR their information should be kept off the e-Health grid. This includes test results and pharmacy information that would normally go into local records as a part of their information exchanges, etc. This would mean that their information would have to be expunged from these systems. Using these concepts there needs to be an opt-out consent form that confirms that by taking this position: · "This could result in harm to me and even my death due to lack of critical information at critical times," and · "I agree to pay for my health care in cash because there will be no information for the doctor to submit to an insurance company for payment," and · "I will not hold my health care providers liable for any damages caused by their not having the information they need to make the best decisions about my care."

This then defines the need for __providers__ need to have the ability to opt-out of caring for these individuals in a data-hamstrung environment. They can be permitted to act in this way and harm their own care without preventing the use of EMRs and other HIT for others.

– //Not a comprehensive health record// — only key health information shared from participating source systems will be available via the PCEHR System, subject to access controls. This information will only be summaries of the episode of care (e.g. a Discharge Summary or an Event Summary) and not the full record of care (e.g. the full hospital medical record). – (TH)-the data and information in the PCEHR is ‘essential’ for individual care so it is a __critical component__ of an effective e-Health system based on EHR functionality. It is a continuum of the care process in the different clinical environments. The information content IS from the essential components of the “comprehensive health record” and cannot be effective if dissociated from this. This statement reflects a lack of understanding of the importance of Summarisation in the communication of care as shown by Fries (1984), Whiting-O’Keefe (1980), Tang (1998) and Bart (2007) – //Not a replacement for local health records// — the introduction of a PCEHR System will not reduce the requirement for healthcare providers and organisations to maintain their own health records. It will complement existing local health records by providing a way of securely sharing health information. – (TH) I have significant concerns over this statement. One of the major deficiencies of the current systems for health record maintenance in Australia (and in other nations) is the __maintaining of their own health records__. There exists extensive research documentation of the failures of the current records used by providers and organisations both in format, structure and ability to provide timely reliable communication of care across the patient care environments. (Kripalani 2007) – //Not a replacement for existing clinical communications —// existing provider-to-provider communications, such as Referrals, Discharge Summaries, pathology requests and result reports, prescriptions etc., will continue to flow using existing communication channels. The PCEHR System provides a new complementary communication channel. – (TH)This PCEHR must evolve from these provider-to-provider communications and be populated by the information gathered within these data / information systems. It must involve these communication channels. Therefore the data / information accessibility by the owner of the PCEHR with these systems is essential. – //Not a single central national database —// the information that makes up individuals PCEHR will originate from multiple sources and be stored in multiple repositories. – (TH) Currently there appears to be a lack of uniformity for the standardisation of data transfer within the Australian health community and this must be resolved for the PCEHR (and all other aspects of e-health) to work. Using existing standards has worked in overseas e-health models and they have an adaptability to cope with modifications of these over time as the systems demands. They have not impeded the development of effective CDS tools. – //Not a way of directly accessing healthcare provider records// — participating healthcare providers will upload copies of clinical documents into the PCEHR System. – (TH)The question needs to be asked what will be the format of these ‘clinical document’s that will be transferred to the PCEHR? Within the current health system existing provider documents would be poor CDS resources of a PCEHR.

**Section 2.5 Principles**

There are ten key principles that have been used to inform the design and approach of the PCEHR System5: • //Personally Controlled:// Individuals will be able to choose whether or not to have a PCEHR, and if they choose to participate, they will be able to set their own access controls. • //Value:// Deliver a PCEHR System that offers value to both individuals and their healthcare providers. • //National infrastructure:// Deliver core elements of PCEHR System infrastructure once, rather than duplicating development costs and efforts and increasing the likelihood of rework.

• //Stakeholder engagement:// Actively engage key healthcare stakeholders in the design and delivery of the PCEHR System.

• //Incremental approach:// Build the PCEHR System in an incremental and pragmatic manner, focusing initial investment in those areas that that deliver the greatest benefits. = (TH) this is a correct perspective and one of the best documented examples of the pitfalls and successes is the Veterans Affairs System in North America documented by R. Kolodner. [Computerizing Large Integrated Health Networks: the Va Success [Hardcover] [|Robert M. Kolodner] (Editor), [|J.V. Douglas] (Assistant) ] =

• //Recognising different starting points:// Balance active support for healthcare providers with less developed capability, while not constraining the ability for more advanced participants to progress. • //Leverage:// More effectively leverage and scale existing and planned eHealth activities and standards in the delivery of the PCEHR System. • //Balancing alignment and independence:// Drive alignment of PCEHR System implementation activities whilst not unnecessarily limiting the ability of participants and vendors to implement locally relevant solutions. • //Trust and confidence:// Deliver a PCEHR System that all users are able to trust that it is governed effectively; individuals trust that their privacy has been handled appropriately; and moreover, users are confident in the quality and safety of the health information provided by the PCEHR System. (TH) Existing research data strongly suggests that the most serious potential threat to secure patient data is by “//clinical staff (85%) who are working in health care institutions that have no rights of access to individual patient information and not external persons or institutions.”// In a recent international discussion on this issue most of the people who were worried about their data //"getting out there"// are worried because they have pre-existing conditions that, if they became known, might cause them to lose their health insurance or be unable to move, etc. Therefore the PCEHR project should look seriously at the different aspects of health insurance reform which may go a long way to alleviate the privacy worries for the vast majority of people. In one study that was preparing for an informatics-based pharmaceutical care intervention more than a decade ago investigators held focus groups with patients (mostly inner-city African-Americans). One aspect asked about was how concerned they might be if data were shared between their physicians' offices and their pharmacists. A consistent response from the patients was //"You mean you DON'T share that information NOW? WHY NOT???"// One conclusion drawn from this discussion group was that the very vocal hyper-privacy advocates speak for very many people, but they are a small number and disproportionately influential. Therefore to facilitate e-health implementations surrounding the PCEHR attention should be directed at the knowledge and experience of e-health systems built across primary and secondary care that manage millions of patients and billions of data items and have been functioning and evolving since the late 1980s. (Complete volume: ** International Journal of Medical Informatics 54 (1999), **   J Gen Intern Med.   2003 May;   18   (5)   : 385–389.  doi: 10.1046/j.1525-1497.2003.20627.x. **, **  ** D. Sands, [] and ** J Am Med Inform Assoc. 1998 Jan-Feb;5(1):104-11.   Kane B. Guidelines for the clinical use of electronic mail with patients. The AMIA Internet Working Group, Task Force on Guidelines for the Use of Clinic-Patient Electronic Mail.)

• //Relevant skills:// Ensure sufficient numbers of skilled practitioners are available to support delivery of the PCEHR System. (TH) This is a major impediment to the success of the PCEHR or any national e-health project and has been a significant factor in many of the failures. In Australia we have very few “clinical informaticians” and these need to be involved at the initial phase of implementation. The involvement of ACHI through its members as the key accredited professional health informatics organisation in Australia is essential to this success. There remains strong resistance to and significant lack of understanding of the benefits of HIT. Several studies have shown that specialised care delivery has a main focus on IT as securing reimbursement benefits rather than patient care. In Primary Care extensive use of IT has not been documented as improving care delivery within this country. [Hannan TJ. Physicians need to understand the importance of information technology in the 21st century. Intern Med J. 2009 Oct;39(10):633-5, and Hannan T., MJA 2011; 194 (4): 211-212]

Yes it is. At present I'm embedding e-health tools into the Bachelor of Medicine/Bachelor of Surgery(MBBS) degree, but it is an up-hill battle and these changes will only influence doctors in training- what of everyone else? We need broad government support to implement changes urgently needed in medical and other nursing and health sciences education, as well as funding. Juanita.

** 2.8.1 Clinical decision support ** The PCEHR System will not provide clinical decision support services. It is intended that the PCEHR System will provide information to help drive clinical decision support algorithms and the industry and healthcare professions will take the lead on delivering clinical decision support services.

(TH) In the PCEHR Concept of Operations document this is the brief statement allocated to Clinical Decision Support (CDS). //“The PCEHR System will not provide clinical decision support services.”// If the system is NOT providing CDS what is the PCEHR providing?

CDS through effective information management tools is FUNDAMENTAL to effective health reform and is the cornerstone of e-Health implementations. This need for CDS has been known for decades and the issues relating to this domain have been well documented by experts such as Coiera, the Institute of Medicine and the WHO.

o Coiera, E., //A Guide to Health Informatics 2nd Edition.//, ed. O.U. Press. December 2003. o Richard S. Dick, E.B.S., Don E. Detmer, Institute of Medicine, Committee on Improving the Medical Record. //The Computer-based Patient Record: An Essential Technology for Health Care.// Washington, DC: National Academy Press; 1991. o Kohen.L Institute of Medicine. //To Err Is Human: Building a Safer Health System.// Washington, DC: National Academy Press, 1999. o Institute of Medicine. //Crossing the Quality Chasm: A New System for the 21st Century.// Washington, DC: National Academy Press, 2001. o // “There is no health without management, and there is no management without information.” WHO-Gonzalo Vecina Neto, head of the Brazilian National Health Regulatory Agency. // In Leão BF. Terms of Reference for Designing the Requirements of the Health Information System of the Maputo Central Hospital and Preparation of the Tender Specifications. Geneva: World Health Organization; 2007.

I haven't read the paper cited by TH but will. I completely agree re insurance, as recent evidence from the Uni Melb paper suggests ( I'll find the paper later, but it's reported here: http://newsroom.melbourne.edu/news/n-130). I was astonished to learn at the 4 Corners round table that insurers can ask and charge consumers on the basis of whether the individual has a PCEHR or not. Health insurance reform is an essential component ensuring the success of the PCEHR. Also TH, insult is not a worthwhile way to have a conversation. How do you know ' at the very vocal hyper-privacy advocates speak for very many people, but they are a small number and disproportionately influential "? To whom do you refer? Where is your hard evidence? Juanita

The amount of stuff people will have to do to be eligable to participate will preclude many people from participating, regardless of desire. In other words it is too hard, rght from up front.

DM. This system stands outside the provider systems and so can only really be a side-track to the clinician's work flow.

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