Tuesday, June 13, 2017

Medical information provided to Pure North S'Energy Foundation by the government of Alberta through AHS (AC434857)

http://www.cbc.ca/news/canada/edmonton/liberal-leader-david-swann-calls-for-audit-of-alberta-health-grant-to-pure-north-private-health-foundation-1.4110951


Liberal Leader David Swann calls for audit of Alberta Health grant to Pure North private health foundation

Swann cites 'potential public health risks' posed by Pure North supplement program

By Jennie Russell, Charles Rusnell, CBC News Posted: May 11, 2017 2:13 PM MT Last Updated: May 11, 2017 2:13 PM MT
Alberta Liberal Leader Dr. David Swann, a former medical officer of health, says he requested an audit because the public “needs to be assured" that millions of dollars in grants to Pure North were handed out for the right reasons.
Alberta Liberal Leader Dr. David Swann, a former medical officer of health, says he requested an audit because the public “needs to be assured" that millions of dollars in grants to Pure North were handed out for the right reasons. (CBC)
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Alberta Liberal Leader David Swann has asked the auditor general to conduct an audit of Alberta Health's $10-million grant to Pure North S'Energy, a private health foundation that offers unproven alternative health treatments.  
In a news release issued Thursday, Swann, a former medical officer of health, said he requested the audit because the public "needs to be assured that millions of dollars of taxpayer money were given for the right reasons and for a program that has a demonstrated track record of improving health."
CBC News reported last month that Alberta Health gave Pure North a $10-million grant to expand its program, which featured high doses of vitamin D and the removal of mercury dental fillings, ultimately to 7,300 mostly low-income seniors.
Fred Horne
Former health minister Fred Horne, against ministry advice, gave Pure North a $10 million grant in December 2013 to expand the foundation’s seniors program. (CBC)
Internal government documents show former Progressive Conservative health minister Fred Horne approved the funding against the advice of ministry officials.
The officials determined the Pure North program was not adequately supported by science, could not prove the health and economic outcomes it claimed, and may cause adverse reactions in participants. The foundation focuses on vulnerable populations such as the homeless, addicted and elderly, and operates free clinics in such places as homeless shelters and on Indigenous reserves.
In his letter to the auditor general, dated May 5, Swann wrote, "my office has conducted a preliminary review into the matter and, after having spoken to several stakeholders, I believe that there is sufficient grounds for concern, especially as it relates to the potential public health risks the vitamin supplement program may cause to a vulnerable population."
CBC News also reported last month that the rationale for the grant was inexplicably changed from a research project to simply an expansion of the program. The change meant there was no ethical oversight of the program.

Health advocate says minister should review program

Pure North collects detailed medical information from its participants, including blood samples, and has built a "mega-database" to which university researchers have been provided access.
The foundation insists it is not conducting research but instead gathers data to gauge the efficacy of its program. Its spokesperson, Stephen Carter, has told CBC News the information provided to researchers is simply a "secondary" use of that data.
Carter also claims Pure North has many studies that prove the effectiveness of its program. He said 50,000 people have participated in the program without any safety issues.
Friends of Medicare executive director Sandra Azocar supported Swann's call for an audit. But she stressed Health Minister Sarah Hoffman has a responsibility to independently investigate the potential effects of the Pure North program on vulnerable Albertans.
"It is a concern that nobody is giving a voice to all the people that could potentially have been impacted," Azocar said, adding that Pure North distributed packets of high-dose supplements to vulnerable Albertans.
"Who is speaking for them?" Azocar said.

Health deputy minister lobbied for Pure North funding

Earlier Thursday, CBC News reported that several former senior civil servants said Alberta Health deputy minister Carl Amrhein had openly lobbied for funding for Pure North while he was official administrator of Alberta Health Services, the operating arm of the ministry. Some of the former civil servants said they told Amrhein he was in a conflict of interest.
Carl Amrhein
Several sources told CBC that Alberta Health deputy minister Carl Amrhein personally lobbied for more funding for Pure North, an alternative health foundation, while he was official administrator of Alberta Health Services. (CBC)
CBC News has revealed Amrhein and his wife were both participants in the Pure North program and that Amrhein, while deputy minister, had met privately with Allan Markin, the wealthy Calgary philanthropist who founded and largely funds Pure North.
In October 2016, Amrhein signed, on behalf of the ministry, a $4.2 million grant to Pure North for a nurse-practitioner clinic.
Both Amrhein and Health Minister Sarah Hoffman have refused to answer questions about the alleged lobbying and conflict of interest.
Azocar, of the Friends of Medicare, said the government has a duty to provide answers.
"I think the more that we know and the more that we hear about this story, there becomes more of a need for us to actually get some answers as to how this request for money, and the money that was previously allocated to this company, all came down," she said.
Wildrose accountability critic Nathan Cooper said the auditor general should review both grants awarded to Pure North. Like Azocar, he said the government must investigate safety concerns raised about the Pure North program.
"Patient safety is obviously the number one priority," Cooper said. "And health dollars should be spent based upon the best science available.
"So that is the responsibility of the health minister to ensure that that is happening," he said. "And if that isn't happening, we definitely need to be taking steps to correct that."
Hoffman's press secretary, Timothy Wilson, did not immediately respond to an interview request from CBC News on Thursday.
If you have any information about this story, or information for another story, please contact us in confidence at cbcinvestigates@cbc.ca

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Still no response to my request for information:



From: <AlbertaConnects@gov.ab.ca>
Date: Sun, Apr 16, 2017 at 1:09 AM
Subject: RE: Medical information provided to Pure North S'Energy Foundation by the government of Alberta through AHS (AC434857)
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Medical information provided to Pure North S'Energy Foundation by the government of Alberta through AHS
I have some questions about the release of patient information to Pure North S'Energy Foundation by the government of Alberta through AHS. From this newspaper article I understand that this foundation was given patient information: http://www.cbc.ca/news/canada/edmonton/pure-north-unproven-benefits-1.4053866 Alberta rushed $10-million grant, eliminated ethical oversight, for unproven health program Review found Pure North program could not prove health or economic benefits By Jennie Russell, Charles Rusnell, CBC News Posted: Apr 04, 2017 5:00 AM MT Last Updated: Apr 04, 2017 5:00 AM M "The Government of Alberta, and Alberta Health in general, isn't interested in funding research projects," Carter said. "They're interested in funding health care for Albertans. So they decided to shift the project and we agreed to shift the project to providing direct health care." Internal documents, however, show that immediately after Pure North received the funding, Markin began seeking access directly through health minister Fred Horne to anonymized patient data from Alberta Health Services. Markin wanted access to the data so university researchers could assess the efficacy of the recently funded seniors program. Pure North collects detailed medical information from its participants, including blood samples, and has built a "mega-database" to which university researchers have been provided access. The foundation, however, insists it is not conducting research but instead gathers data to gauge the efficacy of its program. Its spokesperson, Stephen Carter, told CBC News the information provided to researchers is simply a "secondary" use of that data. I have several questions about this transfer of information first from government to the foundation and from the foundation to the university researchers. 1) It was my understanding that patient information is only released for studies and folks have to go through a particular mandatory review process prior to the provision of patient data. For example to access Netcare data there is this protocol that has to be followed as noted below. http://www.albertahealthservices.ca/research/page8594.aspx As custodians of health information, AHS must evaluate applications for data for studies approved by Research Ethics Boards (REBs) prior to disclosing health information, performing data matching or any other services requested to facilitate the research project. If the custodian decides to support the research as requested, the custodian must impose the conditions suggested by the REB and enter into an HIA Research Agreement in which the researcher agrees to:  Comply with HIA regulations; Any conditions imposed by the custodian relating to the use, protection, disclosure, return or disposal of the health information; and Any requirement imposed by the custodian to provide safeguards against the identification, direct or indirect, of an individual who is the subject of the health information. This can even include requiring consent (even if the REB has waived it) if the information is particularly sensitive. The most common forms to access data include: Data Extraction Paper Charts Direct System Access (Including Alberta Netcare Portal) ********************************************** Was there a specific protocol followed prior to the release of the data on patients? 2) Why was the data even provided to Pure North S'Energy Foundation in the first place since it was not doing a research study? There was no ethics board review of the study thanks to the transformation of the study into a health program by government so why was this foundation given access? 3) What are the rules for release of patient information when there is no study and there is only health services apparently being offered to a group of guinea pig citizens? 4) What sort of consent forms were filled in for these guinea pig citizens so that they would take part in a  health program of dubious benefit and possible adverse side effects? 5) Were there any problems associated with this health program that was funded by Alberta Health? 6) What sort of liability is present for the public purse when information is released in a manner that seems rather unregulated to a private foundation to use as it sees fit? 7) What sort of liability is present when the foundation then generates information (data) out of this quack science project that we pay for involuntarily and this information is released to universities for further quack science work? 8) Who are the decision makers for the release of information and who can we complain to about this matter of what appears to be unregulated release of patient data? Do we complain to the government FOIP person and if so who is this person? Please provide a contact. Thank you for your help. Sincerely, Julie Alihttp://ipo.ualberta.ca/en/Health-Information-Act/Research-and-Netcare.aspx Research and Netcare Expanded Access to Netcare for Research The Alberta Netcare Portal (Netcare) is a viewer of health information provided from many source systems across the province. It is a powerful clinical tool and increasingly investigators are requesting access to this information for research purposes. As a custodian of Netcare, Alberta Health Services (AHS) is bound by the Information Exchange Protocol (IEP) (2007) when providing access for research personnel. Because ANP was developed primarily as a clinical tool, the rules around access for research are currently quite limiting. Revisions to these rules are expected to be tabled in the next session of the Alberta Legislature at which time we will have an opportunity as a collective community of investigators and research administrators to review and comment on how well the changes respond to our evolving research environment. In the meantime, AHS Research Administration has collected specific examples of research activities that are consistent with the intent of the IEP but under the existing interpretation could not acquire data directly from Netcare. The AHS Chief Privacy Officer, Mike Tolfree, has reviewed the AHS obligation under the IEP in light of these examples and has offered an expanded interpretation of the IEP that permits AHS to offer better (albeit not ideal) access for researchers while we await the changes in legislation. Thanks to Drs. Lawrence Richer, Richard Fedorak and Michael Hill who gathered comments from the research communities at the Universities of Alberta and Calgary to inform the drafting of these materials. The new criteria for access and process for obtaining access are available at: http://www.albertahealthservices.ca/8594.asp To see AHS memo on Accessing Information from the Alberta Netcare Portal (ANP) for Research Purposes click here. http://www.albertahealthservices.ca/research/page8594.aspx Data & Health Information Resources When Planning Your Study: Identify Your Data Source(s) Research Facilitation offers consultation to determine data sources most suited to your research questions. To learn more about the availability of AHS data sources for research contact Research.Facilitation@ahs.ca. For information on criteria and procedures for accessing data for research, contact Research.Administration@ahs.ca. When Conducting Your Study Research Ethics Boards (REBs) and AHS, as data custodians, have different responsibilities under the Health Information Act when health information is requested for use and disclosure for clinical research purposes. As custodians of health information, AHS must evaluate applications for data for studies approved by Research Ethics Boards (REBs) prior to disclosing health information, performing data matching or any other services requested to facilitate the research project. If the custodian decides to support the research as requested, the custodian must impose the conditions suggested by the REB and enter into an HIA Research Agreement in which the researcher agrees to: Comply with HIA regulations; Any conditions imposed by the custodian relating to the use, protection, disclosure, return or disposal of the health information; and Any requirement imposed by the custodian to provide safeguards against the identification, direct or indirect, of an individual who is the subject of the health information. This can even include requiring consent (even if the REB has waived it) if the information is particularly sensitive. The most common forms to access data include: Data Extraction Paper Charts Direct System Access (Including Alberta Netcare Portal) Data Extraction Paper Charts Direct Electronic Medical Records Details Data can often be extracted and linked for research purposes from AHS clinical and corporate systems. If you require assistance in identifying appropriate data source(s) for your research project and for information about AHS Data Reporting Repository (AHSDRR), please contact Research.Facilitation@ahs.ca. Research Facilitation provides data extraction and linkage services from AHS Administrative Data Sources for most Research Ethics Board approved projects free of charge. Charges may apply to highly complex projects and industry-funded research. Services include: Refine research question to make it suitable for analysis using administrative data sources Identify appropriate administrative data sources Identify and operationalize cohorts using administrative data Identify and operationalize outcome measures Identify and operationalize covariates and confounding factors Prepare a data acquisition plan that describes steps to take in acquiring data Share Report a problem Go to top GIVE PAY PATIENT FEEDBACK About this site CONTACT Contact Us Emergency Numbers 811 Health Link Patient Feedback Continuing Care Concerns DATA & REPORTING Emergency Wait Times EMS Response Times Expense Reporting Restaurant Inspections Wait Times Reporting GET INVOLVED Advisory Councils Give: Foundations & Health Trusts Patient & Family Advisors Thank the People Who Care Volunteer at AHS GET MOBILE Download our mobile apps © Alberta Health Services 2017 Terms of UsePrivacy Statement What sort of
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It is deeply concerning that public cash is utilized in less than productive ways and no one is held accountable. The Auditor General needs to review this mess.

https://www.facebook.com/friendsofmedicare/

Alberta Liberal Leader David Swann has asked the auditor general to conduct an audit of Alberta Health's $10-million grant to Pure North S'Energy, a private health foundation that offers unproven alternative health treatments.


Alberta Liberal Leader David Swann has asked the auditor general to conduct an audit of Alberta Health’s $10-million grant to Pure North S’Energy, a private health…
CBC.CA
Comments
Julie Ali This is an important request. The use of public funds to finance a dubious alternative health program when real science requires money is an absurd business that needs scrutiny by the Auditor General. My first question would be why was $10 million given up front to the foundation by the PCs?  My next question would be that despite the information provided by AHS to Alberta Health why did the ministry approve of yet more cash to the organization--$4.2 million? What is the foundation doing with the additional funds now that we understand that there was no ethical review required in the transformation of the project to a program that targeted vulnerable groups? Why did Alberta Health not pull the program as folks in BC did? Why did no one consider the liability to the public purse should there be any sort of problems associated with this program? No one has answered my questions about the release of medical information to this private organization. It is my understanding that medical information is only released upon review by the folks at AHS for science projects. As this wasn't a science project but a program in the magical way that such things occur in government--how was information release arranged? What about the participants in these programs? If they came from vulnerable groups did they understand that there were possible problems associated with the program? Who is in charge of these poor decisions in the GOA? Where is the accountability?

ReplyJust now


Julie Ali Despite a request to the GOA on April 16, 2017 I have not received any information. It is important that the ministry be transparent and clarify this situation because this is a ton of cash for a program without benefits in my opinion. If the ministry has not got any good reasons for the expenditure of public cash then they need to establish a decision tree so that we don't see the waste of money due to the failures of bureaucrats and politicians. It's not a good thing and we lose what little confidence we have that folks in the GOA know what they are doing when they do not take the advice of experts and throw money at oil men.

ReplyJust now



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