Helen Chadwick, MA

Myself and my colleague Dr Sabine van der Veer from the University of Manchester are developing a set of recommendations for creating a national system for the routine collection of electronic patient-reported outcomes (ePROs) for people with kidney disease in the United Kingdom.

Several factors led to the development of the recommendations. There is increasing support for the collection of patient-reported outcomes (PROs) in addition to clinical information. PROs can be used to guide the improvement of NHS services and quality of care, and if collected routinely as part of clinical care, they can also lead to better outcomes and improved quality of life for patients.

Collecting patient-reported data digitally, by asking people to use a smartphone or tablet, has advantages over paper-based collection. Research suggests that it can: be easier and more convenient for patients; provide more accurate and complete data; and allow patients to take an active role in managing their health.

There is currently significant interest in the kidney community in using patient-reported information to help improve kidney care. In recent years there have been numerous initiatives designed to collect ePROs in kidney care, both in the U.K. and beyond. The routine collection of ePRO data in kidney care has the potential to improve quality of life for patients, given the high symptom burden of chronic kidney disease.

To develop the recommendations, we first explored views of key stakeholders, including patients, healthcare professionals, commissioners, and facilitating organisations, on the use of ePROs in kidney care. Their feedback helped us to formulate the initial set of recommendations, which were refined through consultation meetings with the stakeholder groups.

The recommendations each consist of a ‘core principle’ explaining what the recommendation is, a ‘rationale’ explaining why the recommendation is important, and a ‘delivery principle’ detailing actionable tasks for ePRO implementation. They have been organised into the following five themes:

  1. National stakeholder groups should promote, inform, and support ePRO implementation
  2. Establish and promote evidence for the impact and perceived value of ePROs
  3. ePRO measurement and feedback should be flexible and integrated into existing IT systems
  4. Ensure that all people with kidney disease can benefit from ePROs, irrespective of their background and skills
  5. Provide kidney centres with support, resources, and flexibility to implement ePROs in their local context

In the next stage of our research, we are consulting with key kidney organisations in the U.K. to help ensure that the recommendations are relevant and feasible to kidney patients and professionals. In the coming months, we intend to launch and disseminate the recommendations through a public-facing roadmap report. In the future, we hope to work with representatives from the key stakeholder groups to action the recommendations.

Ultimately, we hope that the recommendations will help people with kidney disease to be more involved in their care and to improve their health outcomes and quality of life.

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.