RE-SAMPLE – Personalised care for patients with COPD and complex chronic conditions

In March 2021, the Horizon 2020 project RE-SAMPLE started (grant agreement No 965315). RE-SAMPLE is an acronym that stands for: REal-time data monitoring for Shared, Adaptive, Multi-domain and Personalised prediction and decision making for Long-term Pulmonary care Ecosystems. RE-SAMPLE is a project of four years from 2021 to 2025, carried out by ten partners (from The Netherlands, Germany, Greece, Estonia, Italy, Belgium and Spain) and is coordinated by Monique Tabak from the University of Twente (Enschede, The Netherlands). Unfortunately due to COVID, the partners in the consortium could not meet in person yet, but as you can see in the above image, we already had some consortium meetings online, which worked quite well. So what is RE-SAMPLE about?

The main objectives as outlined on the project website are
  • empower patients with COPD and complex chronic conditions in self-care by developing a multidisciplinary, adaptive virtual companionship programme
  • drive structural change in healthcare together with patients, healthcare professionals, scientists, policy makers, and industry

The challenge of COPD and complex chronic conditions

Chronic Obstructive Pulmonary Disease (COPD) is a chronic inflammatory lung disease that has a huge impact on a person’s quality of life. COPD causes obstructed airflow from the lungs and patients with COPD often experience difficulties breathing, are coughing and wheezing and produce mucus. It is often caused by long-term exposure to irritating gases or particulate matter, most often from cigarette smoke. COPD is a progressive disease, and people with COPD often experience exacerbations (acute worsening of symptoms) for which they need additional medication or need to be hospitalised. While COPD is progressive, it is treatable and manageable. However, many patients also have other chronic conditions next to COPD, for example, cardiovascular disease, diabetes mellitus, anxiety and/or depression. This can lead to more exacerbations and increase the burden on people living with these multiple complex chronic conditions. It can be quite difficult for example, to distinguish whether an acute symptom is caused by COPD or by one of the other chronic conditions. Decisions which treatment approach is best for which patient are also more difficult when having several chronic conditions and often exacerbations are detected quite late and it remains unclear what triggered them.

The RE-SAMPLE approach

In RE-SAMPLE we aim for evidence-based, inclusive, preventive care with targeted treatment. Knowing that there is no “one size fits all”, we want to develop an adaptive eHealth programme that treats a person, and not the disease. Using Real-World Data (from the clinic but also from wearables, patient input, existing data bases), predictive models will be developed that provide unique insight into common, day-to-day triggers that can lead to health complications. We want to support shared decision making for timely and personalized treatment and disease management by which seriousness and frequency of complications are reduced and quality of life is increased. Shared decision making has been defined as1

an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences

Within RE-SAMPLE, we specifically acknowledge the importance to combine the expertise of  patients (they are the experts in terms of living with and managing their conditions), healthcare professionals (they are the medical experts) and knowledge generated through data analysis. This is also reflected in the approach we apply for the technology and service model design and evaluation, in which all important stakeholders (e.g., patients, healthcare professionals from various specialties, patient associations, hospital management) are involved from the very beginning and throughout the project. This human centred and value sensitive approach ensures that needs, values and preferences from end-users and stakeholders are identified and incorporated in the design of the virtual companionship programme and the new care path.

The virtual companionship programme consists of three parts

  • a virtual companion for patients, which supports data collection, lifestyle coaching and communication with case managers
  • an active support programme for professionals, which gives an overview of data, for each patient a personal risk profile (risk of that individual patient developing an exacerbation) and monitoring profiles (optimal set of paramaters to monitor for that individual patient), and a shared decision making tool
  • a monitoring and communication console at a shared care facility, which offers additional monitoring outside the hospital

The role of RRD in the project

Roessingh Research and Development (RRD) is the lead of the work package responsible for the elicitation of user needs and specification of the requirements. User needs will be identified in the three countries of the pilot sites: Italy, Estonia, The Netherlands. Next to the requirements, we will also co-design with stakeholders the service model for the RE-SAMPLE to enable integration in care and sustainable implementation. These activities are lead by me and supported by my colleagues at RRD and project partners at the clinical sites.

In line with human centred design, RRD is also responsible for the continuous user involvement in iterative design, ensuring a wide range of end-user studies and usability & user experience testing. We already conducted the first user study, which was lead by my colleague Marijke Broekhuis and supported by other colleagues.

Finally, RRD will evaluate the social impact by conducting a Social Return on Investment (SROI) analysis in the different health systems and societies. This task is lead by my colleague Stephanie Jansen – Kosterink, who is an expert on SROI and clinical evaluation.

Let’s connect

You are knowledgable about and/or interested in COPD and complex chronic conditions and want to help us? There are several ways to connect with us and the project. We share updates in social networks and also via a newsletter. Whether you are a patient, a healthcare provider or any other stakeholder who would like to participate, you can find us here:

 

Footnotes

  1. Elwyn, G., Frosch, D., Thomson, R. et al. Shared Decision Making: A Model for Clinical Practice. J GEN INTERN MED 27, 1361–1367 (2012). https://doi.org/10.1007/s11606-012-2077-6.
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