Choosing Healthcare Options by Involving Canada’s Elderly: The CHOICE Knowledge Synthesis Project Frameworks Presentation

Framework discussion

CHOICE workshop framework slides

Consumer, Carer and Community Engagement Model

All three of these levels are interconnected - you require participation at individual, community and national levels in order to make this framework successful. On an individual level, the patient should be making their own informed decisions about their care WITH the clinician. The aim is to have the clinician treat the patient with dignity and respect, increase patient satisfaction by trying to understand their values, empowering the patient by giving them a greater responsibility in their care, and improving a trusting relationship between staff and patients. Community participation engages stakeholders that may include patients, workers, volunteers, and people involved with organizations and boards who make health care decisions. The aim is to include all of these voices when improving policies that address the needs of the community as a whole. On a national level, the aim is to involve these representative communities and organizations in national policy creation through information sharing, planning, decision making and creating appropriate and targeted service plans. This model is described in the action plan to strengthen consumer participation in Victoria’s public mental health services.

Person-Centered Practice Conceptual Framework

This conceptual framework was created with nurse-patient relationships in mind. The five duties that nurses need to complete are informed flexibility, mutuality, transparency, negotiation and sympathetic presence. Informed flexibility is the easing of decision making through information sharing. Mutuality is the recognition of the others’ values as being of equal importance in decision making. Transparency is making intentions and motivations for decisions very clear. Negotiation involves patient participation in a process that includes patient opinion as a legitimate basis for decision making. Lastly sympathetic presence recognizes the value of the patient by appropriately responding to cues given by the patient. Now being involved in all five of these leads to the nurse or health care provider being fully engaged with the patient. Despite this being the goal, total ‘connectedness’ with a patient can lead to ‘ethical blindness’, and sometimes to balance patient-carer relationships and ethical decision making, or avoid a disagreement the health care provider needs to move to the second circle - partial disengagement. When this happens, the health care provider and patient take stock of the situation and express what the problem is.  This kind of disengagement sometimes needs a period of thought and so for a short time complete disengagement occurs to just take a step back and re-evaluate what’s going on. This model came from an International Journal of Nursing Practice article entitled "A conceptual framework for person-centred practice with older people".

Shared Decision Making Model

During the information exchange, the physician-patient relationship is created. An important part of this stage is the patient establishing their preferences for the amount of information they want and they define their own role in the decision-making process. Then the benefits and doubts of different treatments are provided to the patient. This information exchange has three important components: personal information, expectations, and preferences – all of which are taken into consideration by the health care professional. In the deliberation stage, tools to help make decisions called ‘decision aids’, are given to the patients. Decision aids provide unbiased, balanced information about outcomes relevant to the particular circumstances the patient is in. Overall, the aids and the discussions with the health care providers help patients make informed choices. In the decision stage, both the provider and the patient come to an agreement on which treatment strategy to pursue. Inevitably the provider will not always agree with some decisions, but the entire point of this model is to match the treatment decision with the individual patient’s needs in hopes of achieving the health outcome that they value. The model can be found in Saskatchewan Health Quality Council's report on shared decision making (pg 13).

Ladder of Engagement

The ladder of engagement starts with 0. This is no involvement at all in any step of care. The first and second levels involve the participant, but it doesn’t necessarily mean they are participating in decisions. Care providers may be providing treatment or therapy without explanation or they might manipulate patients by taking advantage of the fact that they may be uninformed or unaware of other options. Placation, Consultation and Informing are all better than manipulation and therapy, but they involve some level of tokenism. Tokenism is basically when a person in power is only making a symbolic effort to include other opinions. While the patient may seem like they are being consulted, the act of discussion may only give the appearance of the HCP listening to their opinions. It’s only done to placate the patient and get them to think they are being heard, when in fact, their opinions may not be as important as they think. The final 3 levels all give the patient a degree of actual power in their care. Partnership and delegated power splits control between the provider and the patient, allowing them to be actively involved and respected in their decisions. The last wrung is total control, where the patient makes decisions on their own. This doesn’t mean they are going through the process alone, it just means that the final decision is in their hands. This model was retrieved from an adaptation of ​Arnstein’s (1969) ladder of engagement (pg 47).

Community Engagement Toolkit 

It starts with informing. The community or patient receives open and accurate information and announcements from the health care provider or organization. The community or patient is then consulted on issues, plans and strategies to get feedback on which direction to take. The health care provider, organization or system then involves the patient or community in the actual planning process. This might be a patient trying to help plan their treatment or a community coming together to help implement a new health policy. Everybody involved then collaborates to make an informed, shared decision. This all leads to the empowerment of the patient or community because they are given a large part of the planning and decision making process. This kind of model has been used by health service providers across Ontario and the Toronto Central LHIN. Model is available on Vancouver Coastal Health Site pg 8.

FSH Community Engagement Model

This model originated in Alberta and was created for the purpose of involving people in particular processes in the health system there. That said, many elements can be taken from this model to suit patient and community needs here. Level 1 is about sharing information both ways. This step involves sharing accurate, timely, relevant information about decisions, policies, services or issues. This step helps increase patient or community ability to effectively contribute in the following levels of engagement.  This can be done through Orientation Sessions, Websites, Brochures, Community Area Newsletters, posters, or one-on-one meetings. Level 2 involves the health care provider or organization actively seeking to get community responses before a decision is made. It considers communities’ views as one source of input that helps the final decision. At this level it’s also important to report back on how the feedback is being used. Consulting patients or communities can involve client or partner surveys, boards, committees, phone interviews, or public/stakeholder meetings. Level 3 collaborates with the community or patient in identifying issues and solutions, and developing alternatives. Final decisions are generally not made by the community or the patient in this model, but the decision is based directly off of their feedback and preferences. Communities and patients monitor to what extent their feedback is influencing the process at this step. Level 4 is similar to level 3 in that it involves collaborating with communities or patients in identifying issues and solutions. The difference here is that people monitor that their contributions actually are reflected in the outcomes, and not to what extent they are influencing the process. Level 5 is when the patient or community is enabled to carry out decisions. The organization or health care provider provides a framework or steps to follow (with resources) to allow communities and patients to plan, manage, and evaluate own services. The model can be found in Manitoba's community engagement framework report (pg 16).

Eight Dimensions of Patient-Centered Care

Respect for patients' values, preferences and expressed needs is a key step. Health care providers should provide patients with an atmosphere respectful of the individual patient, involve the patient in medical decisions and provide the patient with dignity, and respect a patient's autonomy. Emotional support should be provided throughout the entire process. Issues that are addressed include anxiety over physical status, treatment and prognosis, the impact of the illness on themselves and family and the financial impact of illness. The level of physical comfort depends on three areas: pain management; assistance with activities and daily living needs; and hospital surroundings and environment. As mentioned in nearly every other model, information sharing and education is important in engaging patients. Constant communication on clinical status, progress, processes, self care and health promotion is vital to achieving a high level of patient-centeredness. We also can’t forget about patients once they are discharged or leave the office. This step involves health care providers providing detailed information on medications, physical limitations, dietary needs, ongoing treatment plans and references for financial support. The next step reduces patient feelings of vulnerability by focusing on coordination of clinical care, support services and front-line patient care. Patients also need to know they can access care when it is needed. Care providers need to look at an individual’s access to hospitals, clinics and physician offices as well as times for appointments and availability of specialists. Involvement of family and friends is the last step. In this model it’s important to include family and friends in the process by providing accommodations, involving them in decision making, supporting them as caregivers and simply realizing that they have needs too. These dimensions can be found on the National Research Corporation's site