Patient involvement interventions are research-led, patient-focused interventions designed to innovate people's use and experience of healthcare through complex interventions such as shared decision making (SDM) and self-management support (SMS).

The Research Centre for Patient Involvement (ResCenPI) and its affiliates focus on research involving patients that will aid in the design, evaluation and implementation of complex interventions that support further patient involvement in healthcare. The aim is to innovate experiences and delivery of healthcare and improve health outcomes.

ResCenPI wants patients, families and professionals to be involved as partners in research, participants in studies and contributors to the design, development and evaluation of healthcare interventions.

Types of Patient Involvement Intervention Research

The research carried out by ResCenPI and its affliliates focuses on the following areas relating to patient involvement interventions: 

• Patient decision aids, decision coaching and SDM interventions.
• Patient-reported outcome (PRO) measures, patient-centred communication and SMS interventions.
• Patients as partners in the process of designing, implementing and evaluating patient involvement interventions. 

The research is conducted with reference to the UK Medical Research Council's guidance for developing and evaluating complex interventions (Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby J, et al. A new framework for developing and evaluating complex interventions: Update of Medical Research Council guidance. 2021) and the multiple stakeholder framework for Making Informed Decisions individually and Together (MIND-IT) (Bekker in Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briançon S, et al. How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrology Dialysis Transplantation. 2015; 30(10): 1605-14. doi: 10.1093/ndt/gfv209).

Research Areas

The centre and its affiliates apply interdisciplinary research design and methods to examine:

• Patients', relatives' and health professionals' experience of and reasoning about patient involvement methods and interventions in healthcare.
• Context, development, feasibility, outcome and implementation factors to integrate patient involvement interventions into health and illness pathways.
• Methods for involving patients optimally in the research process and exploring consequences in relation to the patient, relatives, health professionals, researchers and study.

ente Skovsby Toft's project

"Measures Used to Assess Patient Involvement Interventions (MAPII) in Denmark Project"

In order to increase the quality of healthcare, it is important for the individual patient to be involved as an active partner in his/her own treatment. This involves focusing on relations, communication and shared decision making as the foundations of collaboration and results of patient involvement.

To increase patient involvement, complex interventions are typically applied. The purpose of such interventions is to inform and engage the patient in making better decisions and living a better life with his/her disease.

When the patient meets the health professionals, these complex interventions aim to ensure his/her needs, wishes and values are taken into consideration in a way that also acknowledges the context.

However, the meaning, definition and specific purpose of patient involvement are subject to disagreement and there is no single Danish measure to evaluate the degree of patient involvement. There is also a lack of knowledge of when and by whom other types of measures may be applied in order to conclude that an initiative is effective.

Bente Skovsby Toft is evaluating the relevant literature to describe and categorise the measures that have been applied to assess patient involvement interventions in Danish healthcare.

In her project, Bente is summarising the functions of the measures and investigating the issues at play when health professionals and researchers select and use measures.
 

Sarah Cecilie Tscherning's project

Sarah Cecilie Tscherning is examining how ResCenPI can achieve its core value of engaging patient partners in research in as many ways as possible.

She continues to lead the study group, where an increasing number of ResCenPI researchers with an interest in patient and public involvement (PPI) participate in monthly meetings.

Sarah and the study group contribute to the development of the PPI content on the ResCenPI website and to examining how to communicate more directly with patient partners as a target group in research.  

Sarah is also planning to gauge interest in establishing a journal club concerning PPI across Aarhus University Hospital. If there is enough interest, Sarah will initiate and lead the scheme.

Additionally, Sarah has finished a scoping review protocol and a scoping review on guiding researchers to engage patient partners in the research process efficiently. This work will generate knowledge that benefits researchers not only at ResCenPI, but also nationally and internationally.

She will also examine the possibility of establishing a sustainable patient partner forum, which can function as a policy group to guide decisions at ResCenPI, support ResCenPI researchers and participate in discussions about how best to involve patient partners.

Anna Holm’s project

Anna Holm is studying patient involvement interventions and how they may support healthcare professionals' clinical reasoning. More specifically, the project aims to 1) investigate healthcare professionals' use of patient involvement interventions in clinical practice at Aarhus University Hospital and 2) examine the impact of patient involvement interventions on clinical reasoning as a mechanism of change in health care practice.

Every day, healthcare professionals make several clinical decisions that are based on both intuitive notions and rational analysis. For each patient, there are typically several possible outcomes that are affected by the decisions made. Patient involvement interventions (e.g., Shared Decision Making (SDM), Patient Decision Aids (PtDAs), Patient-Reported Outcomes (PRO) and Self-Management Support (SMS)) may support the decision-making process. However, it has not previously been explored if and how patient involvement interventions support the healthcare professionals' clinical reasoning.

Clinical reasoning is used interchangeably with terminologies such as clinical decision-making, diagnostic reasoning, clinical judgment, critical thinking and problem solving. The expression can be characterised as the process in which healthcare professionals engage when managing a clinical problem concerning a patient. Overall, clinical reasoning includes the gathering and interpretation of patient data, an action or intervention and a final evaluation of the care or treatment provided.

In her project, Anna Holm is collecting both quantitative (questionnaire) and qualitative (interviews) data to study the link between patient involvement interventions and clinical reasoning.

• Quality of life and follow-up after esophageal and gastric cancer surgery: Developing and testing a new follow-up model  by Ida Hovdenak Jakobsen, Daniel Willy Kjær, Department of Surgery, Aarhus University Hospital
• Involving residents and their relatives in medication changes in residential care – a joint effort against inappropriate medication in elderly people by Kirsten Høj, Forskningsenheden for Almen Praksis (FEAB), Aarhus University
• E-learning in cross-sectional cancer rehabilitation by Mette Terp Høybye, Interacting Minds, Aarhus University & Center for Planlagt Kirurgi, Regionshospitalet Silkeborg
• A mobile health intervention to combat sarcopenia and improve functional outcome after cardiac surgery by Ivy Modrau, Department of Cardiothoracic and Vascular Surgery, Aarhus University Hospital 
• Development and testing of an intervention based on the experiences and needs of hospitalized patients and relatives  by Tina Wang Vedelø, Brain and spine surgery, Aarhus University Hospital