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ARCHIVED - Evaluation of The Prion Diseases Program

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Management Response and Action Plan

  Evaluation Recommendations Management Response(e.g. agree; disagree; agree with conditions) Management Action Plan Deliverables Expected Completion Date  (For Each Deliverable) Responsibility
Accountability Resources
1 Clarify research priorities and secure funding
  1. Clarify and communicate research priorities, ensuring alignment to PDP and PHAC mission and objectives;
  2. Secure long term funding to provide security; and
  3. Establish a mechanism to ensure alignment of all NML prion researchers.
  1. Agree
  2. Agree
  3. Disagree
  1. Research objectives and priorities have been simplified, re-aligned and clarified, beginning with a strategic reorganization of the Program in Fall 2008 and continuing with reorientation and renewed development of applied research activities.Footnote 1  Footnote 2 Footnote 3
  2. The Program’s existing activities are now funded through Fiscal Year 2013-2014, via the Health Canada Blood/Tissue/Organ Safety Program (1998, 2001); and (ii) the federal government’s interdepartmental response to BSE (2009).Footnote 4
  3. As long as direct duplication is avoided and NML and PHAC mandate and priorities are respected, there is neither added value nor available resources to commend establishing a formal mechanism to ensure mutual alignment of all NML researchers who might choose to work on prion diseases. Those receiving mandated funding through the Prion Diseases Program remain mutually aligned, as overseen by the Program Director.Footnote 5
  1. Research activities that are individually fully aligned with PDP, NML and PHAC mission and objectives.
  2. Renewed program funding for research (2009).
  1. Fall 2008 (complete)
  2. May 2009 (complete)
Program Director; SDG NML; ADM IDEP (all). Program Director; SDG NML; ADM IDEP. Current resource levels should be nearly sufficient to ensure long-term viability and service delivery for the research component of the Program. A need has been identified for an additional position (1 technologist) in the Prion Research Section.
2 Review, prioritize and implement identified program improvements in line with available resources
  1. Review recommendations from various reviews, audits and commitments made in annual plans (e.g. Reference Centre Advisory Subcommittee Annual Report/Business Plan for National Centres Evaluation, EuroCJD Audit, and PDP Annual Report/Business Plans)
  2. Prioritise program improvements to respond to the various recommendations strategically based on resources and program priorities; and
  3. Implement these prioritised program improvements.
  1. Agree
  2. Agree
  3. Agree
Recommendations from all of the mentioned reviews and audits have been reviewed by the Program Director with input from the Director, NML Surveillance and Reference Services. Recommendations were assessed for coherence and relevance. Within the limits of these considerations and available resources, all recommendations will be addressed (e.g., research and development to improve clinical-stage diagnostics for Creutzfeldt-Jakob disease; improved turnaround times for reference testing) and implemented in a strategic manner.Footnote 6 Improved efficiency, efficacy and impact of surveillance, reference services and research activities. Ongoing Program Director; SDG NML; ADM IDEP (all). Program Director; SDG NML; ADM IDEP. Current resource levels should be sufficient to ensure long-term program viability and service delivery.
3 Review organizational structure
  1. Consider identifying managers from existing pool of staff and delegating responsibilities; and
  2. Clarify roles and responsibilities within the CJDSS nurse consultant group and with the methods development technician.
  1. Agree
  2. Agree
  1. A revised organization chart has been approved (Fall 2009), which (i) delegates authority for management of the CJD Reference Services laboratory to a designated Laboratory Manager; and (ii) designates a senior technologist within the Prion Research Section to be Laboratory Manager for that group. Additional delegations have been proposed for the nurse consultant group, but workload issues have delayed implementation.
  2. Roles and responsibilities within the CJDSS nurse consultant group have been clarified through discussion and consensus. Better-defined roles are more practically feasible now that excessive workloads have been alleviated somewhat by addition of a fourth nurse position (filled on an unfunded temporary basis via an assignment agreement). Duties of the methods development technician have been revised to include day-to-day participation in reference service delivery.
  1. Improved distribution of management responsibilities among program staff.
  2.  Improved understanding of roles and responsibilities, as well as reduction of excessive workloads inherent to the surveillance work carried out by the nurse consultants (e.g., reduced standby and overtime hours).
  1. Fall 2009 (complete)
  2.  Fall 2009 and ongoing
Program Director; SDG NML; ADM IDEP (all). Program Director; SDG NML; ADM IDEP. Current staffing levels are not sufficient to permit all appropriate delegations to members of the existing staff pool. 1 or 2 additional positions (1 nurse consultant; 1 Section Head for Reference Services) would be required for this re-structuring of responsibilities to materialize.
4 Improve internal and external communications
  1. Institute regular PDP team meetings;
  2. Distribute key planning documents and status reports amongst staff;
  3. Communicate surveillance publications (success); and
  4. Communicate more widely the current mandate and vision (future directions) for PDP internally and externally.
  1. Disagree
  2. Agree
  3. Agree
  4. Agree
  1. Regular meetings are now held individually by the CJD Reference Services Section, CJD Surveillance System team and Prion Research Section.Footnote 7
  2. Planning documents and status reports are regularly shared with staff, either directly or through discussion.
  3. Data from the CJD Surveillance System are now of sufficiently high volume and quality to be published; several such publications are currently in preparation.Footnote 8
  4. Communications of PDP’s current mandate and vision are now provided more widely internally, and plans are under development to enhance external communication.Footnote 9
  1. Better management and communication of ongoing activities at the operational (Section) level.
  2. Improved alignment of operational activities with program mandate and priorities.
  3. Better visibility for program accomplishments.
  4. Better linkages with clients and stakeholders.
  1. Spring 2009 and ongoing
  2. Ongoing
  3. Ongoing
  4. Ongoing
Program Director; SDG NML; ADM IDEP (all). Program Director; SDG NML; ADM IDEP. Current staffing levels are not sufficient to cope with the need for detailed external communication (e.g., via a regular updates to a proposed enhanced web site). 1 additional position (Scientific Information Officer) would be required to deal effectively with this need.
5 Review approach to partnerships and improve effectiveness of key relationships
  1. Identify key partners required to meet program priorities;
  2. Target and improve key partnerships to realize these priorities; and
  3. Encourage other staff to participate according to their corresponding areas of expertise.
  1. Agree
  2. Agree
  3. Disagree
  1. Key interdepartmental partnerships were strengthened with the interdepartmental program for BSE.
  2. Key external partnerships are now re-developing, as the program completes restructuring and re-prioritizes goals.Footnote 10
  3. Program staff have always been encouraged to participate in program activities, according to their respective abilities and interests. No fundamental change in management approach is deemed necessary in this respect.
  1.  Improved integration of federal strategies to deal with prion diseases.
  2.  Improved access to expert advice and research partnerships.
  1. May 2009 and ongoing.
  2. Ongoing.
Program Director; SDG NML; ADM IDEP (all). Program Director; SDG NML; ADM IDEP. Current resource levels should be sufficient to ensure long-term program viability and service delivery.

Explanatory Notes:

Footnote 1
As discussed extensively by the Evaluation Committee, prioritization of research activities is an inherently complex and difficult problem, and if it were undertaken would require striking and maintaining a dynamic balance among factors such as staff availability and skill; financial resources; facilities and equipment; partnerships; client needs; and the changing status of knowledge and other research in the field. The committee agreed that ultimately it may not be possible to guarantee ongoing optimization of research priorities for a small program such as this one. Instead, emphasis will continue to be placed on ensuring alignment of research with PHAC and NML priorities and with the long-term mandate and public health deliverables of the program.
Footnote 2
In Fall 2008, the Scientific Director General NML approved a decision to re-situate 6 FTEs from the Prion Diseases Program to NML Science and Technology Core Services, and in so doing to establish a new Section (Molecular Pathobiology). This decision facilitated an alignment of research activities to better address the mandates of both the Prion Diseases Program and the NML Core Services.
Footnote 3
The research activities of the remaining 2 scientists in the Program have shifted significantly toward more applied objectives, in the area of discovery, validation and technical development of diagnostic markers for human and animal prion diseases. Key current project foci are (i) discovery and validation of urine proteins as pre-symptomatic markers for BSE; and (ii) studies of diagnostic accuracy and utility of proteins in cerebrospinal fluid as clinical-stage markers for human prion disease.
Footnote 4
See Table 1, page 2 in Evaluation Report.
Footnote 5
Research priorities and alignment for a particular subject area are not typically managed in a global fashion across NML, but rather are investigator-driven within the criteria defined by program- and project-level funding agreements as supervised by the program Director and the Scientific Director General. Moreover, no resources have been specifically allocated to implement the proposed “top-down” coordinated approach. The current approach works well, by facilitating the flexibility required for excellent research while ensuring that mandated program deliverables are delivered. Note that although the discovery-research activities of the new Molecular Pathobiology section remain involved with prion diseases, there is no overlap between these activities and those of the Prion Diseases Program.
Footnote 6
The public health priorities of this program have changed significantly during the 10 years covered by this evaluation. In particular, the threat of variant Creutzfeldt-Jakob disease (vCJD, the result of human infection with BSE) to the health of Canadians, although not negligible, is now considered to be much smaller than feared before 2005. Nevertheless, the potential threat posed to human health by Chronic Wasting Disease (CWD) in Canadian populations of cervids (deer, elk, moose and caribou) is a new issue on which vigilance must be maintained. However, the largest effort by the Program in public health is expended on the ca. 30–40 cases of classical forms of human prion disease that are confirmed annually in Canada, and for which PHAC operates the only public health program in Canada.
Footnote 7
No NML laboratory program currently holds regular program-wide in-person meetings. Attempts on the part of the Program to do so in the past have mostly proven to have limited value. In a busy laboratory environment (including daily work in CL3 biological containment where workflow must be interrupted to hold meetings) it is a much more efficient and effective use of time to hold regular, operations-focused Section-level meetings, periodic meetings between the Director and senior staff, and various smaller, topically oriented meetings ad hoc with directly involved staff as needed.
Footnote 8
The relatively small size of Canada’s population dictates that the absolute number of cases of human prion disease will be small (ca. 30–40 cases confirmed per year). This has been a contributing factor in the relative slowness of the publication of peer-reviewed reports from the Canadian CJD Surveillance System, as it has taken approximately a decade for a clear picture of the epidemiology of human prion diseases in Canada to emerge.
Footnote 9
The main external client base for the Prion Diseases Program – Canadian clinicians and other health professionals – is very large and widely dispersed, which makes it a challenge to maintain detailed ongoing communications regarding the program. An upgraded website that will help to address these communications issues is under consideration, but so far human resources have been insufficient to come fully to grips with the requirement. In a small number of cases, local visits to provide continuing medical education on the subject of human prion diseases have been successfully undertaken by members of the CJD Surveillance System.
Footnote 10
Natural external partners for research include PrioNet Canada and the Alberta Prion Research Institute, both academically based networks for prion research in Canada. Prion Disease Program members have played and continue to play significant roles in partnership with these organizations. In addition, work continues to strengthen communication and cooperation with Provinces and Territories, which will likely continue to rely on federal support for prion disease surveillance and reference services.

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