The survey included users of 22 language editions in countries.
Protection of this information becomes increasingly more complicated when electronic records are involved, transmission or sharing of protected information occurs, or when the use of information is for purposes secondary to the collecting practitioner use in treatment Schweitzer, Difficulty or complexity in maintaining the integrity of personally identifiable information is accepted as a challenge, however, sanctions against violation of rights concerning health and personal information exist and are a significant financial and criminal liability with additional liabilities potentially levied on a state by state basis Schweitzer, ; Pritts, In order to ensure that every effort is made to protect both the subject of the information and the organization or researcher collecting the information for use in research or providing care, Institutional Review Boards Human Subjects Committees IRBs and specific requirements for Risk Analysis and Management within all health organizations, programs, and clinics Nass et al.
How is PAMS affected? Such contracts are implied from facts and circumstances showing a mutual intent to contract, and may arise by the conduct of the parties. All of the major milksharing networks make clear their stance to be uninvolved in the specific between party agreements involved in PAMS including questionnaires and screening tools Eats On Feetsasserting that all individuals take complete responsibility for outcomes of milksharing as individuals Human Milk 4 Human Babies.
This explicit maintenance of non-participation ensures that as networks, they are not included in provisions requiring adherence to HIPAA. These organizations provide description of their belief that information collected for research or analysis should not be undertaken by the networks, presumably for both philosophical and practical conflict of interest reasons.
Encouragement to violate this foundation of expectation by soliciting third party information is counter productive to the specified intent and spirit of milk sharing as a private arrangement strictly between the donor and recipient, and undermines the security in providing information confidentially.
So who is intentionally asking that this expectation and potentially contractual obligation to honor privacy in the PAMS agreement be violated?
There is no IRB approval for any of the actions undertaken by this organization. In the frequently asked questions tab of the website, it is stated that there is absolutely no follow up on any information provided, and that all information is provided anonymously.
So, if the reporting is anonymous, how does the follow up occur? The answer is likely that this website is an integrated WordPress account, as it is hosted by Bluehost, and WordPress has the capability of tracking the IP addresses of users who interact with websites.
Not particularly anonymous, or secure. The efforts are redundant, as my own research and that of several other teams operating in the US and Canada are collecting practice information and participant beliefs.
These research endeavors are being conducted under approved IRB circumstances, and with full disclosure to all participants.
Considering this information is being collected in such a way that it cannot be used for legitimate research, it is likely that such a site poses more harmful potential than benefit for any efforts to generate policy and evidence regarding PAMS.
Closing Thoughts The PAMS community and participants are operating under very biased and intensive scrutiny from existing health authorities. Concerns about the cavalier attitude of those participating and the presumed ignorance of those involved is frequently discussed.
A site clearly not manned by an experienced researcher or data manager, seeking information from third parties without any right to do so and potentially in violation of individual state and federal regulations regarding protected information and contract law, and without recourse for those who may be seriously wronged in this process certainly does not refute these views of PAMS.
It is deeply disturbing to me, personally, to see otherwise well respected researchers who would certainly be expected to understand their inability to be associated with such an undertaking per their involvement with research institutions already are being named as partners in this endeavor through World Milksharing Week.
This involvement and endorsement is in direct opposition to stated intentions to stay removed from involvement and to support individual accountability of participants on their networks and sites. Enhancing privacy, improving health through research.
Health Law and Policy. Reconciliation of the cloud computing model with US federal electronic health record regulations. Journal of the American Medical Informatics Association: JAMIA, 19 2 We wish them the best in their new endeavor.AGH - Afgri Group Holdings - is an investment holding company with interests in a number of food, agriculture and financial services related companies providing products and services to ensure sustainable agriculture and food security.
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