This workstream on Patient Agency addresses how to meaningfully embed and integrate patient expertise up-front and throughout the design, organisation, implementation, and evaluation of treatment and care as well as capturing and utilising patient preferences, for example, the unmet needs of women with bleeding disorders.

About the workstream

The term ‘Patient Agency’ refers to patient’s ability and capabilities to act. To determine the factors affecting patient agency it is necessary to look at patterns, structures, and mental models. This includes perspectives on shared decision-making, patient preferences and, more specifically, the importance of partnerships, organisation of care, health literacy, and the importance of ensuring institutional changes that are needed, including a profound cultural change amongst all stakeholders.

This workstream addresses how to meaningfully embed and integrate patient expertise up-front and throughout the design, organisation, implementation and evaluation of treatment and care as well as capturing and utilising patient preferences, for example, the unmet needs of women with bleeding disorders.

Composition

The composition of the workstream aims to reflect the diversity of key actors who have hands-on knowledge of challenges and possible solutions in this thematic area. This includes, but is not limited to: patients, healthcare professionals, industry partners, private companies, policymakers, researchers, and academics. 

The general membership profile is built around required skill sets and may evolve throughout the co-creation process. The initial skill sets include the ability to ‘problem map’ salient points and their relationships, requiring: 

  • Hands-on knowledge of the topic area,
  • Genuine willingness to learn about, and actively contribute to, a systems change culture,
  • Experienced, analytical, open, hands-on ability to remove stakeholder ‘hats’, and
  • Respect of Chatham House Rule and culture of conduct and engagement.

Each workstream brings together 16-20 individuals, which is broad enough to ensure a comprehensive overview, while small enough to be workable.

Workload

The mandate duration and meeting cadence are due to change based on collective needs and decisions. However, the preliminary anticipated commitment is three to four (3-4) hours per meeting, once a semester, trimester or quarterly, subject to the above collective decision.

The workstream met for the first time in Q4 2021.

Public outcome

As part of sharing the outcome of the work of the EHC Think Tank, the first paper from the workstream on patient agency in which workstream members identify five key themes for in-depth discussion relevant to patient agency is now published. Across the five themes, four common perceived challenges stand out: uneven relationships between patients and healthcare professionals, services and systems; paternalism and hierarchical cultures; failure to recognise problems; conservatism and resistance to change.

Bok A, Noone D, Skouw-Rasmussen N, EHC Think Tank. Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency. The Journal of Haemophilia Practice. 2022;9(1): 27-35. https://sciendo.com/article/10.2478/jhp-2022-0004

Patient agency is a term often used interchangeably in relation to the patient healthcare journey. In order to develop a universally recognised meaning of the term there is a need to understand how it is being defined and discussed in literature. This literature review, prepared by OPEN Health, focuses on reviewing existing research which has incorporated the term ‘patient agency’, and discusses the importance of viewing patient agency as a framework, focusing on the patients’ decisions to engage in their healthcare, and in turn how they then interact with the environment.

Targeted literature review – Understanding the description and application of patient agency in the healthcare context by OPEN Health

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