ASN's Mission

To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005


The Latest on X

Kidney Week

Please note that you are viewing an archived section from 2021 and some content may be unavailable. To unlock all content for 2021, please visit the archives.

Abstract: PUB099

Delivering Patient and Public Involvement During the COVID-19 Pandemic: Experience from the NightLife Study

Session Information

Category: Dialysis

  • 701 Dialysis: Hemodialysis and Frequent Dialysis


  • Cluley, Victoria, University of Leicester, Leicester, Leicestershire, United Kingdom
  • Hull, Katherine Leigh, University of Leicester, Leicester, Leicestershire, United Kingdom
  • Quann, Niamh A., University of Leicester, Leicester, Leicestershire, United Kingdom
  • Burton, James, University of Leicester, Leicester, Leicestershire, United Kingdom

Group or Team Name

  • NightLife Study

Patient and Public Involvement is essential for research as it provides a supportive environment for patients to share their opinions. Traditionally, involvement events are held in person. National lockdowns due to the COVID-19 pandemic limit such meetings. Alternative approaches to enable continuation have been undertaken by the NightLife study team.


Patient and Public Involvement opportunities were advertised through: leaflets, social media and the Kidney Patient Involvement Network (KPIN). Patients expressed their interest by completing and returning leaflets using a pre-paid envelope, direct message on social media, or emailing the dedicated email address. A virtual introductory event was held.


Over the course of a two month period, 16 expressions of interest were received via social media (n = 3), KPIN (n = 2) and leaflets (n = 11) from 10 men and 6 women. The patients were of a variety of ethnic backgrounds and renal replacement therapy modalities.
An introductory, virtual meeting was completed. The main reasons for patients’ inability to attend were conflict with healthcare appointments or work. One patient expressed nervousness about attending the meeting due to unfamiliarity with virtual platforms.
Communication and engagement methods were discussed with patients at the meeting:
Flexible meeting times due to commitments (dialysis schedules, work and personal responsibilities)
Virtual calls during dialysis treatment may be preferable
All forms of communication (e.g. letters, email, social media, phone) and meeting options (e.g. virtual, face-to-face, phone)
Offer follow-up interviews after group discussions so patients feel they can effectively express personal experiences
Advertise in all formats possible including patient organisations
Use different languages and interpreters


Patients are enthusiastic to engage in Patient and Public Involvement events for research making it is achievable despite social restrictions. Flexibility of approach and delivery is essential, especially for individuals on haemodialysis where there are already significant healthcare commitments. Using multiple formats for engagement will enhance inclusivity and ensure the panel is representative.


  • Other NIH Support