Everyone at the table – engaging the patient voice in nephrology
With the announcement of the patient voice initiative in CJASN, nephrology marks a watershed moment, as patient engagement in clinical research becomes mainstream. This moment has, of course, been coming for a while nudged along in particular by the efforts of the SONG initiative. The Standardised Outcomes in Nephrology (SONG) initiative aims to establish a set of core outcomes to be reported in all kidney disease research. Importantly these outcomes are being developed in consultation with patients, clinicians and researchers. This should ensure that future research will reflect their shared priorities rather than the interests of the researchers themselves.
The recently published clinical practice guidelines for the screening and management of high blood pressure in children, due to be discussed on NephJC this week, included a family representative on their 17-member subcommittee which examined 15,000 papers over 11 years to develop their recommendations. While this choice likely influenced several aspects of the guidelines it was most obvious in the addition of a patient experience vignette which brought the discussion back to where it belonged, with the patient. Patient and family involvement in trial design and setting research priorities should give us more meaningful outcomes and more engaged patients.
Of late, clinical meetings run by groups such as the International Society for Peritoneal Dialysis have offered free registration for patients and their families. By encouraging the submission of patient abstracts they have further validated the patient and their family as an integral part of the treating team. Throwing the net wider, clinical research groups such as the KidGen consortium have run public events where patients and their families can meet the scientists, hearing about their work and challenging priorities.
Clinicians have, of course, always listened to their patients, addressed their concerns and tailored their treatments to meet their priorities. The facile illustration that doctors care only about phosphate while their patients care only about sleep quality is insulting to both groups, but it is true that better research and better care results from all voices being heard. Just as clinicians and researchers have become more active on social media, so too have patients and this has enabled research collaborations between motivated patients and interested clinicians whose relationship is not muddied by a clinical relationship. Patient advocates such as Paul T Conway, Kevin John Fowler and Lori Hartwell have joined robust discussions and reminded us of where our priorities should lie. I look forward to seeing their influence on CJASN as Patient Voice Editors over the coming year and the changes in our profession that a greater partnership with patients will bring.