Dignity Care: Person-centered care supported by digital tools

In the healthcare system, 10 % of all patients are estimated to represent 2/3 of all costs. These patients often have several chronic diseases and are in need of complex and long-term care. However, high costs are no guarantee of high quality, as multimorbid patients often suffer from fragmented healthcare services, little attention to the patient needs, values and preferences and reactive care. There is an urgent need for innovation of poor quality and costly care pathways for patients with complex and long-term needs (CNLs).

A root cause for poor care quality for patients with CLNs is a disrupted information flow, across care settings, which makes it difficult to coordinate both within the service, and between patient and service. In recent years, healthcare information has been increasingly digitized, partly with an eye to facilitate sharing of information across time and space.

However, even as the technical barriers are eliminated, the uninterrupted information flow along the patient journey is still moot due to legal, organizational and economic barriers. In the Norwegian context, the privacy concerns have so far eclipsed the needs for care-coordination. There is a current deadlock on the process of creating one-citizen – one-record. Additionally, the electronic health record is currently not optimally organized to support person-centered care, as 1) the patient voice is completely missing, 2) it is difficult to get a comprehensive overview of who is involved in the care of a patient and 3) the overview of which health challenges the patient is dealing with, and the plan for each challenge, is currently difficult to extract from the large volumes of information contained in the EHR of persons with complex long-term needs. To move beyond the deadlock we are currently in, we need to understand better what the gains could be, if we managed to give clinicians better support for person-centered, integrated and proactive care.

Goal

The project's main aim is to improve healthcare services for people with chronic diseases and long-term needs. This will be done by developing DigiTeam – a planning-and cooperation tool for complex care pathways, including patient and next of kin.

Objectives

Dignity Care aims to answer the following questions:

1. What are the effects of DigiTeam, compared to regular tools? An RCT.
2. How does DigiTeam affect the professional awareness and management of complexity of the patient journey. A process evaluation.

If our project succeeds, the results will contribute to quality standards for digital cooperation tools in the healthcare service. Our project contributes to creating digitally supported person-centered healthcare services beneficial for patients and professionals.

Method

Information always precedes actions. Therefore, how we present data to clinicians will influence how they perceive and act in their clinical work. Dignity care aims to construct and test an information-presentation that supports a person-centered, integrated and pro-active management.

The main additional information elements are:

1) a presentation of all EHR data from GP, home-care and hospital services in one system

2) Thematic information presentation that outlines:

a) the patient voice

b) an overview of relevant professionals working with the patient and

c) an overview of the current health challenges and their current management plans.

We aim to test DigiTeam by asking professionals to solve a real patient challenge presented as a vignette. The vignette represents a real-life challenge, experienced by one of our patient partners, and supported by real EHR data. The clinicians who will solve the task, will be randomized to see the EHR-data with (intervention group) or without (control group) the new information elements.

The effect measurement will come from the analysis of the professional’s written notes on 1) what he/she perceives as the patient’s challenges and situation and 2) a suggestion for how the professional would manage the situation. A team of blinded evaluators will score the notes by how person-centered, integrated and pro-active the clinicians note was, and the overall quality of the suggested care-management.

Additionally, we will do a process evaluation, with interviews and focus groups, to understand how the professionals and the “patient” experience collaboration around the issues they have to solve, with and without using DigiTeam.