From Patients to Partners: Integrating Patient Expertise

Pharmacy practice is on the verge of a significant evolution, as pharmacists in Quebec and several other Canadian provinces gain expanded decision-making authority. In this context, greater responsibility will translate into more frequent opportunities for assessment and intervention. Several approaches recognize that the clinician’s expertise and the patient’s lived experience are complementary. In this article, I examine several models, drawn from medical clinical practice and applicable to pharmacy practice, that support the active participation of the people in our care.

The Person in Our Care: A Resource to Be Valued

The Patient Partner: Expertise Integrated into the Care Team

A patient partner is an individual who shares their views and contributes to identifying potential solutions based on their lived experience, with the aim of improving care and services. They share this experience with care teams, particularly through participation in committees or special projects.[1] As a full member of the care team, their experiential knowledge complements the scientific expertise of other professionals.

Their contribution extends across five key domains:

• clinical care and services
• governance
• research
• teaching
• improvement of health policies and programs

Their lived experience helps optimize processes, humanize practices, and support decisions that are more closely aligned with patient needs.[2]

The Accompanying Patient: Unique Support Along the Care Journey

Among the various roles a patient partner may assume, that of accompanying patient holds a particular place. An accompanying patient is someone who, drawing on their experience with a specific health condition, supports, equips, and informs patients or family members facing a similar situation.[1]

This need is especially evident in oncology. Lack of emotional support is among the main gaps reported by people living with cancer, and accompanying patients are well positioned to help address this issue. Observed outcomes include improved navigation of the health system, adoption of beneficial behaviours, reduced distress, better adherence to treatment, and fewer treatment interruptions.[3]

Espace partenaires en cancérologie[1] is a community of patients, caregivers, and professionals that provides support, information, and peer matching for people affected by cancer at the CIUSSS de l'Est-de-l'Île-de-Montréal, an integrated university health and social services centre (regional health authority) in Montreal. It promotes external collaboration, incorporates the perspectives of patient partners to improve care, and offers structured support through training, meetings, and ongoing guidance in their roles.

This model of peer support is not limited to oncology; it is also used in mental health and other areas of care. Existing initiatives include Peer Support, which supports people living with kidney failure, and the 1:1 Peer Support program, which accompanies individuals affected by multiple sclerosis.

Shared Decision-Making to Navigate Uncertainty

As clinicians, we are often the ones who introduce shared decision-making.

It is described as “an approach whereby, when the time comes to make a decision, clinicians and patients share the best available evidence while encouraging patients to consider the different options, in order to arrive at a decision that aligns with the patient’s preferences.”[4]

This approach was illustrated by INESSS in its 2019 video capsule La prise de décision partagée : une approche gagnante (Shared Decision-Making: A Winning Approach)[5], which emphasizes the central role of dialogue between the health professional and the patient. The video outlines the steps of a consultation based on this model and highlights its relevance when an intervention involves a degree of uncertainty. In this context, the clinician presents the relevant scientific data, while the patient shares their values, expectations, and preferences.

The principles of shared decision-making were illustrated in the INESSS video La prise de décision partagée : une approche gagnante (2019, French only)[5], which highlights the central role of dialogue between the healthcare professional and the patient. As an English-language equivalent, the Ontario Renal Network’s video Shared Decision-Making: Supporting Patients and Families Living with Chronic Kidney Disease[6] illustrates the main steps of shared decision-making and how evidence and patient values inform choices under uncertainty.

Beyond the process itself, it is important to clarify in which situations this approach is truly appropriate. As noted in the article Faut-il partager ou non? (“To share or not to share?”),[7] shared decision-making is relevant only when there are several reasonable options with a comparable balance of benefits and risks. In such situations, there is no single universally “correct” decision: the best choice depends on the individual’s life context, priorities, and values.

When these conditions are met, information sharing becomes the core of the process. Decision aids and educational materials support this exchange: the clinician is responsible for presenting the current state of knowledge, while the patient interprets this information in light of their own preferences. Some models are integrated into clinical practice guidelines, and a number of decision aids are already available to help structure clinical discussions.

Among these, the PEER decision-support tool (PEER Simplified Cardiovascular Decision Aid) is a good example of how a clear, comparative presentation of options can support shared decision-making. This type of tool facilitates understanding of available choices and contributes to informed dialogue, without replacing the discussion between clinician and patient.

Shared decision-making has been associated, for patients, with greater satisfaction, a more realistic understanding of benefits and risks, and fewer decision-related regrets. For health professionals, a partnership-based approach can enhance work satisfaction, reduce stress, and strengthen professional engagement by fostering more humane practices.[8]

Challenges and Realities

Perceived Low Interest from the Person Receiving Care

It may be tempting, based on attitude or non-verbal cues, to conclude that someone does not wish to participate in decision-making. However, data clearly show that most patients want to be better informed[9] and more involved in decisions.

What may appear to be a lack of interest often reflects something else: limited confidence, hesitation to ask questions, or simply not realizing that they are not only allowed, but encouraged, to play an active role in their care.

A person’s level of interest is not static. It can vary over time or with changes in health status. For example, someone may not wish to receive extensive information about treatment for iron-deficiency anemia, yet be very willing to engage actively in the management of chronic pain.

It is therefore important to renew our invitation to take part in the decision-making process. This simple gesture often helps re-engage the individual.

Limited Clinical Time

Time constraints are the barrier most frequently cited when discussing changes to practice. When shared decision-making is not yet embedded in routine care, it may be perceived as an additional step that slows the consultation. However, evidence indicates that consultation length does not necessarily increase.[4] 

For a person eligible for statin therapy, the quickest solution might appear to be recommending treatment immediately. Yet, by using the PEER clinical tool, a brief discussion focused on the person’s priorities can often lead to a shared decision that is better understood and more readily accepted, thereby reducing subsequent questions and hesitation.

Tools at Our Disposal

Having trusted materials readily available can greatly support our interventions with the people in our care. Providing written information or links to online resources allows them to better understand and retain information, revisit it at their own pace, and share it with their loved ones. This promotes autonomy, supports informed decision-making, and helps sustain behaviour change in daily life. By directing people to reliable resources, we also reduce the risk that they turn to inaccurate information on the web and help ensure that all members of the care team convey consistent messages.

In this regard, RxVigilance offers a wide range of patient information documents. These are easy to locate, whether through keyword search or by consulting the “Patients” index at the bottom of the home page. You are invited to complete the form at the end of this article to view examples.

The Patient as an Indispensable Partner

Whether through partnership, peer support, or shared decision-making, these approaches all underscore that a person’s lived experience is an essential complement to our clinical judgment. To support this shift, a variety of patient-focused tools can enhance understanding, structure dialogue, and make these practices more accessible in everyday care.

In pharmacy, such approaches are powerful levers for humanizing our interventions and fully exercising our expanded role.

We would like to acknowledge the valuable contribution of Ms. Sandie Oberoi, M.A.P., patient partner and head of Espace partenaires en cancérologie within the CIUSSS de l’Est-de-l’Île-de-Montréal’s oncology program. 

👉 To learn more about patient information in RxVigilance, access our supplementary document by filling out the form.

References

1. 1. CIUSSS de l’Est-de-l’Île-de-Montréal. Espace partenaires [Internet]. Montréal (QC): CIUSSS-EMTL; updated 2025 Nov 10 [cited 2025 Dec 7]. Available from: https://ciusss-estmtl.gouv.qc.ca/nous-joindre/espace-partenaires

   2. Unité de soutien SSA Québec. 5 implications possibles pour les patient(e)s partenaires [Internet]. Longueuil (QC): SSA Québec; 2024 Aug 26 [cited 2025 Dec 7]. Available from: https://ssaquebec.ca/nouvelles/5-implications-possibles-pour-les-patientes-partenaires/

   3. Pomey MP, de Guise M, Desforges M, Bouchard K, Vialaron C, Normandin L, et al. The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol. BMC Health Serv Res. 2021;21(1):10.

   4. Thériault G. Si la décision partagée est si efficace, pourquoi l’ignorons-nous? Can Fam Physician [Internet]. 2019 Feb 21. Available from: https://www.cfp.ca/news/2019/02/21/02-21-2

   5. La prise de décision partagée : une approche gagnante [Internet]. Québec (QC): Institut national d’excellence en santé et en services sociaux; 2019 [cited 2025 Jan 27]. Available from: https://www.inesss.qc.ca/formations-et-outils/approche-methodologique/soutenir-la-prise-de-decision-partagee.html

   6. Ontario Renal Network. Shared Decision-Making: Supporting Patients and Families Living with Chronic Kidney Disease [Internet]. 2019. Available from: https://www.youtube.com/watch?v=4ueDJEFytMI

   7. Thériault G, Grad R, Dickinson JA, Breault P, Singh H, Bell NR, Szafran O. Faut-il partager ou non? Quand la décision partagée est-elle la meilleure option? Patient Educ Couns. 2020;103(9):1861-1867.

   8. Ministère de la Santé et des Services sociaux du Québec. Cadre de référence pour le partenariat entre les usagers, leurs proches et les acteurs du réseau de la santé et des services sociaux [Internet]. Québec (QC): MSSS; 2018 [cited 2025 Jan 27]. Available from: https://publications.msss.gouv.qc.ca/msss/fichiers/2018/18-727-01W.pdf

   9. Légaré F, Thompson-Leduc P. Twelve myths about shared decision making. Patient Educ Couns. 2014;96(3):281-286. doi:10.1016/j.pec.2014.06.014. Epub 2014 Jul 3.