Content and system development of a digital patient-provider communication tool to support shared decision making in chronic health care: InvolveMe

Abstract

Background: Chronic conditions present major health problems, affecting an increasing number of individuals who experience a variety of symptoms that impact their health related quality of life. Digital tools can be of support in chronic conditions, potentially improving patient-provider communication, promoting shared decision making for treatment and care, and possibly even improving patient outcomes. This study aimed to develop a digital tool for patient-provider communication in chronic health care settings and describes the data collection and subsequent content and software development of the InvolveMe tool. InvolveMe will provide patients with the opportunity to report symptoms and preferences to their health care providers (HCP), and to use secure messaging to interact with the HCPs. Method: The study employed a combination of interviews with patients with chronic conditions and focus groups with HCPs, examining experiences with chronic conditions and the potential use of a digital tool for support. Participants were recruited from two outpatient clinics at a university hospital. Data collected from interviews and focus groups were analysed using thematic analysis. Content and software development was informed by the data collection and by tool development workshops.Results: Analyses from interviews with patients (n = 14) and focus groups with HCPs (n = 11) generated three main themes: 1) Making symptoms and challenges visible, 2) Mastering a new life, and 3) Digital opportunities for follow-up. Each main theme generated separate subthemes. Theme 1 and 2 gave input for content development of the symptom and needs assessment part of the tool, while theme 3 provided ideas for the software development of the InvolveMe tool. Tool development workshops with patients (n = 6) and HCPs (n = 6) supplemented the development. Conclusions:A digital tool such as InvolveMe has the potential to support shared decision making for patients with chronic health conditions. Through integration with an existing patient portal such a tool can provide opportunities for meaningful interactions and communication between patients and HCP's, particularly with regards to symptoms, needs and preferences for care.

A Digital Patient-Provider Communication Intervention (InvolveMe): Qualitative Study on the Implementation Preparation Based on Identified Facilitators and Barriers

“…InvolveMe was developed at the initiative of HCPs aiming to improve follow-up for two specific categories of patients: renal transplant recipients and patients with nonfunctioning pituitary adenomas [ 41 ]. InvolveMe was internally developed at the hospital in close cooperation with registered nurses, physicians, health support personnel, patients, researchers, and system developers ( Figure 1 ).…”

“…InvolveMe was internally developed at the hospital in close cooperation with registered nurses, physicians, health support personnel, patients, researchers, and system developers ( Figure 1 ). A detailed description of the content and system development of InvolveMe is provided elsewhere [ 41 ]. The InvolveMe intervention contains two features: (1) a secure message feature and (2) a secure assessment feature (ie, predefined list) where patients can prioritize their need for symptom management, information, and preferences for care from home and on a scale from 0 to 10 ( Figure 2 ).…”

“…Patients and HCPs can use the secure message feature to interact with each other between or after outpatient visits [ 41 ]. Completion of the secure assessment feature generates a summary that is sent to the patients’ HCPs for use in upcoming consultations.…”

“…As part of the main focus of this study is to identify local determinants to tailor the intervention into the intended context (ie, HCPs’ practice) and identify key aspects for an implementation plan, most study participants represented the HCP perspective. However, to ensure that the patient perspective was also continuously involved, 2 patients with experience from the InvolveMe development study [ 41 ] were included in the steering committees to ensure knowledge, inclusion, and prioritization of the patient perspective(s).…”

Translation and cultural adaptation of a romanian version of the communication assessment tool (CAT_Ro)

“…Lately, there is a tendency to develop digital tools to achieve better communication, especially with patients suffering from chronic conditions. One such tool is InvolveMe , the patient can communicate symptoms, the evolution under treatment, information related to lifestyle, working conditions, health concerns, and emotional and psychological aspects [ 39 ]. Using such a tool, before or after the visit, is a complementary way to improve communication between patients and health professionals and paves the way for future research in the direction of digital communication.…”