ALBERTA MEDICAL ASSOCIATION COMMENTARY DRAFT ALBERTA HEALTH ACT HEALTH CHARTER AND ADVOCATE REGULATION

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1 ALBERTA MEDICAL ASSOCIATION COMMENTARY DRAFT ALBERTA HEALTH ACT HEALTH CHARTER AND ADVOCATE REGULATION 1. COMMENT ON THE PATIENT S VOICE IN THE PROCESS We note that it will be particularly valuable to learn what patients think of the proposed health charter. We were pleased to see the public engagement process that you have initiated. We hope that what you learn from Albertans in your online consultation will have weight and that patients will be engaged throughout establishment of the Health Advocate s office and throughout its operations. We would encourage you to share the input you receive from patients in terms of how it impacted your eventual decisions and even where it did not. I believe everyone benefits from detailed knowledge of patient reaction to your proposed charter and regulations and how the Health Advocate intends to be affected. 1

2 2. ALBERTA MEDICAL ASSOCIATION (AMA) COMMENTARY ON DRAFT HEALTH CHARTER CURRENT DRAFT AMA COMMENTS When I interact with the health system, I expect that I will: 1. Have my health status, social and economic circumstances and No comment. personal beliefs and values acknowledged. 2. Be treated with respect and dignity. This is an extremely important element of the charter and one that we fully support. There is a corollary, however, in terms of the expectation on the patient to treat others in the system similarly. We recognize that there is an imbalance of power between patients and physicians/other providers, so of course we have an extraordinary responsibility to act respectfully. While you have acknowledged that patients must also respect the rights of other patients and providers in part two of the draft charter, we feel it may be beneficial to link that idea directly here as an expectation as well. 3. Have access to team-based primary care services. We agree with the spirit of this item, but the language is vague. What does team-based primary care services mean? There are many different groups that are called teams in primary care. We believe that in the absence of a good definition, it would be more appropriate to define the experience and outcome of such care: access to care that is coordinated and integrated across the continuum of primary care. 4. Have the confidentiality and privacy of my health information respected. Additionally, an appropriate and adequate level of access to these services needs to be determined with some defined measure attached. (Per other comments later in this document, the simple term reasonable is overly vague.) The AMA believes every Albertan should have his/her own family physician. We agree with the spirit of this item, but the language needs more specificity in today s e-health environment. Contemplating shared electronic health records, there should be reference that the least possible amount of information about a patient will be shared for purposes of delivering care and only to those who 2

3 need to know. Although the Health Information Act enshrines these principles, we feel they warrant inclusion at the charter level. 5. Be informed in ways that I understand so that I may make No comment. informed decisions about my health, health care and treatment. 6. Be able to participate fully in my health and health care. This item is unclear. What is intended? Does this contemplate participation in decision making around treatment and care as enabled by other provisions of the charter? Alberta initiatives such as Choosing Wisely will contribute to this end. We recommend that this item should be clarified. 7. Be supported through my care journey and helped to find and We strongly support this requirement. access the health services and care that I receive. 8. Receive information on the health system and education about healthy living and wellness. We agree with the spirit of this item, but from whom will the patient receive information and how? Who is accountable for delivering this education given the abundance of available information sources, some of dubious quality. 9. Have timely and reasonable access to safe, high quality health services and care. Additionally we would add an important concept: Receive evidence-based information on the health system and education about healthy living and wellness. How is reasonable access defined? Without a definition, the value of the statement is questionable. What are the consequences and alternatives if that care is not delivered accordingly? What actions would the Health Advocate take in such situations? What actions would the government take? What recourse do patients have? If care cannot be provided in a timely and acceptable fashion, then patients should be able to seek that treatment elsewhere and government should foot the costs. These considerations should be contemplated and reflected in the charter. 3

4 10. Have timely and reasonable access to my personal health information. 11. Have the opportunity to raise concerns and receive a timely response to my concerns, without fear of retribution or an impact on my health services and care. We strongly support the spirit of this recommendation. Clarification of timely and reasonable would add value. No comment. 4

5 CURRENT DRAFT AMA COMMENTS Taking my circumstances into account and to the best of my abilities, when I interact with the health system I understand that I will be asked to: 1. Respect the rights of other patients and health providers. See commentary under point 2, above. 2. Ask questions and work with providers to understand the No comment. information I am being provided. 3. Demonstrate that I, or my guardian and/or caregivers, The role of guardians or caretakers for incapacitated or understand the care plan we have developed together and that incompetent individuals should be reflected throughout the steps are being taken to follow the plan. charter, for example, point 5 above with respect to making informed decisions. We note also that the term care plan should be defined because it has a specific meaning in many health settings. 4. Treat health services as a valuable public resource. No comment. 5. Learn how to better access health services. It is unclear from whom and how this information would be sought. We also feel it does not match well with item 7 above that says that patients need to be supported and helped through their health care journeys. There are reciprocal responsibilities for learning and navigation, but we do not think this requirement 5 communicates the idea well. 6. Make healthy choices in my life. No comment. 5

6 CURRENT DRAFT As I work to be a healthy citizen within Alberta, I expect that: 1. When economic, fiscal and social policies are being developed by the Alberta government the impact of those policies on public health, wellness and prevention will be considered and steps taken to ensure that public policy is healthy policy. AMA COMMENTS This item should reflect that the policies of government should continue to be based on the premise that access to health care should be based primarily on need, not ability to pay. The charter should also provide clarity about where accountability lies when policies of the government appear to be at odds with a group of patients or an individual patient. How will the Health Advocate deal with such situations? What is the responsibility of government to reconcile such differences when patients are presenting legitimate needs and concerns that are not aligned with current policy? 6

7 3. ALBERTA MEDICAL ASSOCIATION (AMA) COMMENTARY ON ADVOCATE REGULATION REGULATION AMA COMMENTS 1. Definitions In addition to the items proposed, and per our commentary in part two, above, we recommend that definitions be added for: Reasonable and timely access Team-based primary care 2. Additional functions We concur with the concerns expressed by the College of Physicians & Surgeons of Alberta regarding additional functions. The various organizations, statutes, regulations and protocols that already function to support patient care must be considered and coordinated with supplementary function from the Health Advocate office. Avoid confusion and duplication of function. The CPSA submission notes a number of mechanisms already in play: The Mental Health Patient Advocate The Office of the Alberta Ombudsman The Public Guardian Protection for Persons in Care Legislation The Office of the Information and Privacy Commissioner Alberta Health Services Patient Concerns The complaint and discipline powers of health profession colleges The Health Charter in particular references patient expectations and responsibilities in the public system. There are situations, however, where privately paid services are part of a care sequence that is also partly publicly funded. There are many uninsured services attached to ambulatory care, for example. Should the charter and regulations be based on the method of funding? 3. General delegation No comment. 7

8 REGULATION AMA COMMENTS 4. Power to act on a complaint Our comment here is closely related to that of item 2 (additional functions). In a complaint situation, where investigations may be underway around the same incident or patient in multiple jurisdictions, coordination of the outcomes is important. Someone needs to be responsible for all the actions underway in all jurisdictions and provide a comprehensive perspective that best reflects what the patient needs. The Health Advocate will need to address these situations. 5. Refusal to review The regulation states that the Health Advocate shall inform the complainant of the decision to refuse to review a complaint. That regulation should state that the communication shall also include the reason for refusal. 6. Procedures In line with need for coordination, we support the CPSA position that a complaint falling within the jurisdiction of a health profession college must be referred there. Additionally, however, where a complaint or concern involves more than one profession at a time, for example an incident involving a physician and pharmacist, coordination should be led by some organization/body to prevent duplicative investigations yet still respect the necessary requirements of the various colleges in pursuing their duties. 8

9 REGULATION AMA COMMENTS 7. Requirement to provide information and documents We strongly support the CPSA s recommendation in this section: Section 7 arguably requires a college to disclose the results of competence and incapacity assessments of regulated members that would otherwise be confidential under 3(52) of the Health Professions Act. Section 52 of the Health Professions Act allows for confidentiality to ensure the ill or addicted professional has the opportunity to obtain treatment and monitoring with the intended outcome of greater public protection. Giving the Health Advocate broad and unrestricted access to such information may have the unintended consequence of defeating the intent and purpose of Part 3 of the Health Professions Act. It has long been accepted that such confidentiality (and statutory privilege under section 9 of the Alberta Evidence Act) is necessary to ensure full and frank participation in continuing competence programs and encourage regulated members to self-report incapacity through addition or illness. Moreover, allowing the Health Advocate such broad and unrestricted access to such information does not respect clause 4 in the first section of the draft Health Charter. Section 7 of the regulations should be revised to protect continuing competency and capacity assessments under the Health Professions Act from disclosure to the Health Advocate. 8. Record of complaints and reviews No comment. 9. Disclosure No comment. 10. Report No comment. 11. Proceedings privileged No comment. 12. Consequential amendments No comment. 13. Expiry No comment. 9

10 4. OTHER COMMENTARY In our 2009 submission to the Minister s Advisory Council on Health (MACH), the AMA made suggestions for the content of a future health charter. A patient charter would communicate to Albertans what they can expect of their health care system, including the objectives and principles. The charter could also be used to describe a patient s responsibilities (e.g., to form a relationship with a primary care physician of their choice) as well as provide commitments (wait time guarantees). The AMA is on record supporting wait time guarantees for Albertans. The outline of a charter, based on the 2009 National Health Services (NHS) Constitution, follows below. The draft health charter goes some way to meeting these recommendations in terms of what patients can expect of their health care system. The draft charter s expectations, however, deal more with how patients should expect to be treated, not what they have a right to expect. While expectations 9 and 10 offer timely and reasonable access, as we have already noted, those parameters are not defined. The AMA supports well-defined wait-time targets and patients should have recourse if those targets are not met to receive those services in other places under their provincial coverage. In terms of patient responsibilities, the draft charter encourages patients to be respectful of each other and the providers around them and to participate more actively in understanding and promoting their own health. The draft charter focuses on seeking information, active participation, being educated about these things, etc. It does not ask patients to commit to a primary care physician of their choice. There is strong evidence that when patients form formal attachments with family physicians, care is better, patients are more satisfied and the system benefits as well. Formal attachment is one of the key concepts of Primary Care Network (PCN) Evolution now being discussed with the Ministry of Health that seeks to provide a health home for every Albertan. This is a model with the kind of integrated and continuous teambased care that we believe the draft charter contemplates for patients. Since about 80% of Albertans currently receive care through a PCN, the concept of forming an attachment would strengthen both quality care and mutual responsibility between the patient and the physician. Charter Outline England s 2009 NHS Constitution provides an illustration of how delivery system principles and funder/patient/public rights and responsibilities could be enunciated in a single charter document. The outline below, loosely based on the NHS document, is one presented by the AMA to the MACH in Some elements are already addressed in the draft charter of this consultation. 10

11 Many are not addressed or only incompletely. Patient responsibilities in the NHS model are covered in a much more direct way. Depending on the feedback you receive from patients, this NHS wording may be advisable. We present this outline as a good encapsulation of our commentary on the draft charter and the regulations. MACH SUBMISSION PATIENT RIGHTS Access to Health Services The right to: Receive Alberta health care services free of charge The draft charter references publicly funded services, but as we have noted that does not cover the full continuum of care. Access the right mix of quality health care services based on the community Convenient and timely access to services (within prescribed wait time standards where they exist) Access alternative care choices outside the Alberta health care system if timely access within the Alberta health care system is not available The draft charter does not address variability of needs by community. This begs the question previously raised about balancing government policy against the needs of patient groups as we have commented. The draft charter offers only vaguely defined timely and reasonable access. The draft charter does not specify how long patients can expect to wait or offer recourse if expectations fail to be met. Respect, consent and confidentiality The right to: Be treated with dignity and respect The draft charter meets this requirement. Be given appropriate information relevant to care The draft charter meets this requirement. Privacy and confidentiality The draft charter meets this requirement. Informed choice 11

12 The right to: Choose a family physician practice The draft charter does not meet this requirement. Make informed choices about your care The draft charter meets this requirement. PATIENT RESPONSIBILITIES Recognition of the ability to significantly contribute to one s own health and wellbeing, and takes responsibility for it. The draft charter moves in this direction in a number of ways but takes a less direct approach. Select a family physician practice The draft charter does not meet this requirement. Treat Alberta health care staff with dignity and respect Provide accurate information about health condition and status. The draft charter meets this requirement. The draft charter does not meet this requirement. Keep appointments The draft charter does not meet this requirement. Follow the course of treatment The draft charter supports this requirement. Participate in important public health programs Provide feedback on treatment and care received The draft charter moves in this direction in a number of ways but takes a less direct approach. The draft charter supports this requirement. March