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Guidance Documents

Legal and Privacy Policy

Disclaimer

The content of the Canadian Arthritis Patient Alliance (CAPA) web site is intended for education, information and communication purposes only, and does not constitute medical advice. You should always seek the advice of a physician.

Links to third-party web sites from the CAPA web site are provided for the convenience of the user, and CAPA has no control over, nor responsibility for the content or owners of the sites so linked.

Although due diligence in providing the content of this web site has been exercised, neither the CAPA nor any parties to or associated with this web site warrants the accuracy of the information contained in the web site. CAPA does not endorse any product, treatment or service and any mention or identification of any such product, treatment or service does not constitute endorsement of the product by CAPA.

The Canadian Arthritis Patient Alliance (CAPA) does not assume, and expressly disclaims any liability to any person for any claims, damages, liability or any loss resulting from any use of or reliance on the content of this web site or from the content of any third-party web site link. The user assumes all risks of using the content included in, or linked from this web site.

Information contained in the CAPA web site and all titles, characters, names and graphics used in connection with this web site are the property of, or used with permission by the Canadian Arthritis Patient Alliance (CAPA).

Reproduction, republication, modification, translation or distribution of any material contained in this web site is strictly prohibited, except when permission is requested from, and granted by the Canadian Arthritis Patient Alliance.

Privacy Policy

The Canadian Arthritis Patient Alliance (CAPA) is largely a virtual organization. We depend on email and our web site for communication. We take privacy issues seriously and maintain our web site in accordance with the Canadian Personal Information Protection and Electronic Documents Act (PIPEDA), and the basic privacy policy model of the Canadian Standards Association.

Personal information is defined as any information about a specific, identifiable individual such as name, address, phone number and e-mail address. Some personal information is publicly available through such sources as telephone directories or public databases, however there is still a responsibility to apply the principles of the legislation to the collection, use and disclosure of this information.

Personal information will only be used for purposes that are defined and explained in advance. Use or disclosure for any other purposes requires further knowledge and consent from the individual.

To ensure compliance with the legislation and respect and proper care of personal information, we adhere to the 10 Privacy Principles.

10 PRIVACY PRINCIPLES

1. Accountability The Canadian Arthritis Patient Alliance (CAPA) is responsible for the protection of your personal information collected by us in conjunction with organization activities or information provided while joining CAPA. This responsibility extends should personal information be transferred to or collected by third parties on our behalf. Questions may be directed to: PrivacyOfficer@arthritispatient.ca

2. Identifying purposes Before we collect any information the Canadian Arthritis Patient Alliance (CAPA) will identify the purpose for collection of that information. Most personal information collected is provided by individuals at the time that they join CAPA. We collect name and contact information to enable us to send out CAPA materials and information, and establish eligibility for special local or regional opportunities. We collect type of disease and medications taken to ensure relevance of our activities to member needs. We collect career, speaking and advocacy experience to help us identify individuals who might consent to contribute specific knowledge or skills. Only basic contact information is required information.

3. Consent No information is collected without an individual's knowledge and consent, except in very limited situations permitted by law. For instance, when you provide information on a form for purposes you understand and agree to, or by not opting out of an opportunity to provide personal information we are collecting.

The Canadian Arthritis Patient Alliance uses opt-in consent in most instances, e.g. you must voluntarily provide or consent to provide personal information, such as when you join CAPA. Opt-out consent will only be used for non-sensitive information with low privacy impacts, for which you will be provided with information and have the right and opportunity to opt-out of such information uses.

4. Limiting information collection Only information relevant to the purposes that are identified is collected. We collect information fairly and lawfully, and directly from individuals wherever possible. You have the right to provide only as much, or as little, information as you choose to share.

5. Limiting use, disclosure, and retention The Canadian Arthritis Patient Alliance will always request your permission to share any of your information with a third party. For instance, should there be an opportunity for someone with your type of arthritis to be a consumer collaborator or adviser to a research project about that type of arthritis, we would contact you to determine your interest and to obtain your permission to provide your contact information to the researchers engaged in the project. When information is no longer necessary it will be destroyed by appropriate means.

6. Accuracy of your information Wherever possible information is collected directly from individuals, for instance when joining CAPA. We assume this is accurate information, unless we are told otherwise. To ensure that information is up to date, we rely on individuals to update their information from time to time and provide a convenient link on our web site for this purpose.

7. Safeguards to your personal information The Canadian Arthritis Patient Alliance (CAPA) uses appropriate safeguards to protect all personal information in its custody and control. Only those with a 'need to know' have access to your personal information.

8. Openness about our privacy policy The Canadian Arthritis Patient Alliance (CAPA) is a virtual organization, and we post our policies on our website. We make reasonable efforts to inform individuals about our policies and procedures, the reasons why we collect the information we collect, use or disclose personal information, and how to access your personal information. Should you have a question about our privacy policy, contact: PrivacyOfficer@arthritispatient.ca

9. Access to your personal information Individuals who provide personal information to CAPA while joining our organization will be able to access their personal information to keep it current. On request, we will also tell you for what purpose information was collected and any use of that information. For questions, please contact: PrivacyOfficer@arthritispatient.ca

10. Challenging compliance If, for any reason, you are concerned about our compliance with our privacy policy, please contact: PrivacyOfficer@arthritispatient.ca

 

Principles and Codes for Ethical Conduct and Partnerships

1. Principles and Codes of Conduct To ensure that the mission and goals of CAPA are not influenced or jeopardized, the following principles and codes of conduct will be applied with the understanding that:

  • CAPA believes it is unique in its structure, providing a broad based voice of Canadians living with or dealing with arthritis. CAPA speaks expertly from the patient and consumer perspective and/or experience.
  • CAPA values are patient centered and focused.
  • CAPA develops positions on health policy, products or services in collaboration with other organizations, consumers, the arthritis academic and research community, health care providers and government free from concern or constraint of any entity or other organizations. CAPA identifies the sources of all materials or documents it presents.
  • CAPA's top priorities include putting arthritis on the national agenda for Canadian health care.
  • CAPA is proactively engaged in partnerships, collaborations and alliances with government, industry, and others, to achieve its mission and objectives.
  • CAPA will be competing with other groups and organizations for funding and funding resources.
  • CAPA is aware that increased examination by the public of what organizations do for them and how their dollars are spent has increased the need to be accountable, transparent, and respectful of public, donor and stakeholder supporters.
  • CAPA discloses all funding sources for all its activities.

2. Principles and Code of Ethics for Partnerships Relationships with donors take place within the context of the Canadian Arthritis Patient Alliance Mission, Strategic Priorities and Guiding Principles:

  • CAPA will actively solicit sponsorships from organizations, foundations, government and other groups or individuals for both operating and project purposes. This funding constitutes 100% of CAPA's funds.
  • CAPA does not endorse any specific products or services. This should not be seen as a barrier to partnership or collaboration.
  • CAPA accepts only unrestricted grants and consulting fees for educational and other activities. CAPA will formally and officially define the parameters of its relationships and partnerships with sponsors and others so as to ensure no undue influence or conditions override CAPA's mission, objectives, priorities, or operations.
  • CAPA employees or Steering Committee volunteers do not own shares in any company providing support, except as part of group pension or investment plans.
  • CAPA employees or Steering Committee volunteers have no equity interest and do not receive personal “in-kind” support of any kind from any health-related organization other than their salaried position.
  • CAPA will openly disclose all corporate support received on an annual basis, and openly respond to any inquiries about support. The exact amount of support from different groups and organizations is considered confidential and may be disclosed only upon permission of these groups or organizations.
  • CAPA will equitably and objectively acknowledge and/or recognize sponsors and supporters of all CAPA activities.
  • CAPA encourages multi-sponsored events and activities, and all exclusive relationships must be cleared by the CAPA Steering Committee and parties concerned.
  • CAPA encourages agreements between itself and its partners to ensure transparency in all relationships.
 

Conflict of Interest Guidelines

1. Volunteers All participants are volunteers who come together for a common purpose. Participants bring their personal values and interests with them on the understanding that the goals of the Canadian Arthritis Patient Alliance (CAPA) will take precedence.

2. Defining Conflict of Interest Conflict of interest exists when a person has a private or job-related interest potentially sufficient to influence how she or he might conduct themselves as a CAPA participant. Conflict exists whether he or she is actually influenced. Conflict of interest may arise for any number of reasons but those most commonly encountered by organizations such as CAPA would fall into one of the following broad categories:

  • Commitment or obligation to incompatible goals of another organization. It is assumed that CAPA's mission and objectives are pre-eminent including matters subject to a vote.
  • Unauthorized use of confidential or other CAPA information and documents. The environment of trust and confidentiality in Steering Committee matters and discussions must be protected.
  • Interest in personal revenues dependent on CAPA positions or decisions. Employees, consultants and contractors receiving income from CAPA must relinquish membership and voting privileges to do so.

3. Declaring Conflict of Interest Where a conflict of interest, actual or perceived, is deemed to be present:

  • The conflict must be declared to the presiding officer of the meeting and all meeting participants prior to conducting the business of any CAPA meeting.
  • The nature of the conflict is to be recorded in the minutes of the meeting.
  • The participant declaring a conflict may, at the discretion of the presiding officer, take part in the discussions or leave the meeting room for the said discussion, and will have no vote.

4. Affect on Quorum Absence from part of a meeting for a declared conflict of interest will not adversely affect the quorum of the meeting.

5. Confidentiality The President and Executive Committee, with CAPA Steering Committee approval, choose the timing and approve the format for release of CAPA information and documents. Matters of a confidential nature, meaning those not available to the general public, which are shared as part of CAPA business must be respected. No one shall publicly disclose CAPA information or use it for purposes outside CAPA without the prior consent of the CAPA Steering Committee.

 

CAPA Core Values

The beliefs and values CAPA holds influence its direction, guide its work and articulate its motivation. All CAPA members volunteer their time and energy to defining and influencing health policies and issues that affect access to health care medications, and patient support.

CAPA believes that the first expert in arthritis is the person with arthritis.

CAPA believes that people with arthritis have the right and responsibility to be included in all policy and health care decisions related to their health and quality of life.

CAPA believes that patients have the right to be included in making research related decisions affecting their health and quality of life.

CAPA believes children and youth with arthritis have the right and deserve the opportunity to fully develop physically and mentally and that people with arthritis of all ages have the right to participate freely and equally in all aspects of life.

CAPA believes in the value of its members and associates, and provides opportunities for them to obtain the knowledge they need to become effective advocates for themselves and others living with arthritis.

CAPA believes that all Canadians must be aware of arthritis.

 

CAPA Policy Statement Regarding ACAP Incorporation and Bylaws

The Canadian Arthritis Patient Alliance (CAPA) is a grass-roots independent, national education and advocacy organization with over 800 active members and supporters across the country. CAPA members bring their experience, perspective and voice to improve the quality of life of all people living with arthritis.

CAPA is in full support of the incorporation of the Alliance for the Canadian Arthritis Program (ACAP) and of the proposed ACAP bylaws of incorporation. CAPA believes:

  • Incorporation will allow ACAP to enter a contractual agreement with the Public Health Agency of Canada (PHAC) to facilitate the development of a National Arthritis Framework.
  • Incorporation will protect ACAP’s directors, members, and legal and business interests.
  • Incorporation will satisfy the needs of industry sponsors who are reluctant to provide funding to an entity that is without legal status.

CAPA also supports the continued egalitarian representation of all sectors of the arthritis community in the activities and governance of ACAP. We believe this allows for the best representation of needs and identification of issues, and encourages all member organizations and individuals to contribute their strengths and abilities to further ACAP efforts toward projects such as the implementation of a National Arthritis Framework.

CAPA is in full support of the development of a National Arthritis Framework, and believes:

  • A National Arthritis Framework will build on the Standards of Prevention and Care identified at the ACAP Summit – Ottawa, 2005.
  • National Arthritis Framework will improve the quality of life of all Canadians living with arthritis, reduce the social and economic burden of arthritis and ensure a future where arthritis related disability and morbidity are diminished.

 

Background: Alliance for Canadian Arthritis Program (ACAP)

The ACAP began in 2002 with CAPA as a founding member. The ACAP brings together twenty arthritis stakeholder organizations to support individuals living with arthritis. Since 2003, ACAP members have contributed expertise and resources to collectively find new solutions to the challenges patients face everyday.

The ACAP Summit, held in Ottawa in 2005, identified twelve standards for prevention, care and treatment of arthritis, and an action plan to gain federal government commitment to a National Arthritis Framework.

The ACAP Steering Committee, in October 2007, voted overwhelmingly – with one abstention - to incorporate to protect its members and directors from liability, to satisfy Intellectual Property ownership and data disposition, and to enable partnership with Health Canada (Public Health Agency of Canada) for the development of a National Arthritis Framework.

The ACAP Steering Committee enabled the development of a Business Case in August 2008 that will further the development of a National Arthritis Framework.

The ACAP supported National Arthritis Framework will build on identified priority goals, strategic directions, and the roles and resources required to effectively reduce the burden of arthritis in Canada, and will enable the realization of the benefits defined in the Business Case.