Comments by Nancy Smith Posted on January 29, 2008

Page #	Line #	Comments/Criticisms	Suggested Alternatives
		The following comments and suggestions were passed unanimously by the board of the Health Advancement Collaborative of Central New York on January 24, 2008. The Collaborative is a multi-stakeholder organization of hospitals, physicians, employers, business, and consumers with a mission to improve health care quality, safety and access in Central New York while decreasing or maintaining costs.
20	29-32	Any consent process based on 'opt-in' presents duplicative and burdensome administrative procedures for providers and patients alike that may deter their participation in an exchange and, as such, undermine the ability to realize the fundamental goals of a RHIO -- to improve the quality of patient care and increase the efficiency of our health care systems.	The consent process should not be based on 'affirmative' consent. Patients should have the right to 'opt out' of participating in an exchange at any point in their treatment.
22	13-34	Clarity is needed to ensure that the analysis of utilization data for the purpose of assessing practice patterns and changes in health care costs is allowed under Level 1 for the purposes of consent.	Include in the description of 'quality improvement and disease management' under Level 1 the following: "the analysis of utilization data to assess practice patterns and changes in health care costs."
24	22-30	The language for level 1 and 2 consent forms is weighted toward items that may dissuade a patient from electing to participate in a RHIO.	The standardized consent forms for Level 1 and 2 should also state the benefits to the patient of participating in a RHIO.
		In the event that proceeding with an 'opt out' approach to patient consent is not accepted, the Collaborative endorses the following recommendations of RHIOs of Upstate New York Unite (R-UNYT).
20	29-32	Requiring facility-based consent could result in duplicative and burdensome administrative procedures for both patients and providers, especially in small urban and rural settings with a majority of small medical practices. Consent by facility may also serve as a serious deterrent to small practice participation in RHIOs, undermining the ability to get the critical mass of practices needed for an exchange to be successful.	While having consent occur at the RHIO level is the desired approach, we understand that this may not be acceptable. We therefore recommend that, in order for RHIOs to most effectively manage the consent process, patients be given the option of a) consenting through the RHIO for multiple providers and/or facilities participating in the RHIO, or b) consenting for each provider organization as currently proposed. This change would allow communities, through their multi-stakeholder governing boards of providers, insurers and consumers, to educate consumers on which of the two consent approaches best fits the local provider profile and consumer culture.
20	39-41	This reinforces a patient-centric versus facility/organization-centric approach that gives patients the option of allowing the entire universe of providers in an exchange to obtain their information instead of the encounter-by-encounter approach. RHIOs should play an active role in educating consumers on the benefits of participation and consent options.	Give consumers the option to authorize the release of their information to all providers participating in the exchange on the standard consent form. Additionally, allow the RHIOs to distribute the form to the consumers in advance, along with standard state educational materials about regional exchanges and the consent process.
20	37-38	This language would address different interpretations of what is being proposed.	Once a provider in one organization has received patient consent to access a patient's information, also allow her/him access to that patient's information regardless of the facility at which the patient is receiving care.
19	28-38	In discussions among R-UNYT members, it quickly became clear that the interpretation of the one-on-one exception varied widely from member to member. Clarification in the boundaries of the one-to-one exception are required.	The boundaries of the one-to-one exchange exception need further clarification to address the following and other questions: a) must a relationship with the patient exist for both sender and recipient in a one-to-one exchange, b) are both direct, one-way transfers of data (e.g. physician sending referral data, hospital sending discharge summary) and transfer of data in response to queries (e.g. physician requesting and receiving lab results she/he previously ordered) permissible in the definition of a one-to-one exchange, c) can these one-to-one exchanges be daisy-chained (e.g. physician requests and received lab results and then sends them to another physician in a referral package), d) under what circumstances could an e-prescribing system quality for the one-to-one exception, and e) can a system (e.g. lab, radiology reports) send copies of results ordered by one physician to other physicians they have requested be copied on the original order?