Kidney News Online reached out to Kevin Fowler to speak about his upcoming talk on how CJASN has incorporated Patient Voice into a monthly feature in the journal at the 2019 Council of Science Editors Annual Meeting on the topic of “Patient Engagement in Scholarly Publishing” on May 6^th in Columbus, OH. Mr. Fowler is a Patient Voice Editor for CJASN and will be presenting along with Christine Laine, MD, MPH, FACP , Editor-in-Chief, Annals of Internal Medicine Senior Vice President, American College of Physicians and Bill Silberg , Director of Communications, Patient-Centered Outcomes Research Institute (PCORI).

Q: What does your role as Patient Editor for CJASN entail?

A: There are three Patient Editors – myself, Paul Conway, and Lori Hartwell. All three of us contribute articles on our own, but mostly we find people to provide commentary on different articles. We find those that can explain what it means to be a person living with kidney disease and/or caregiver. From my perspective, it has been fairly easy to find contributors, and I think CJASN has been very pleased with the content they’ve received so far.

The goal of the feature is to talk about the significance, or impact, of these studies on patients. For instance, a person living with kidney disease, Nicole Jefferson, provided commentary on an article and was subsequently asked to participate in a meeting in Canada on dialysis. I provided commentary about transplant referrals, and the [Centers for Medicare & Medicaid Services] contacted me for my perspective, based upon that article. It’s been a good effort.
 

Q: Why is patient engagement important to you? To other patients? To physicians?

A: From my personal experience, when I was seeing a primary care doctor, I told him that I had a family history of PKD, and he never thought there was a sense of urgency to refer me to a nephrologist. Therefore, I had to request to get an ultrasound done on my own. I went from being told that my kidney function was okay, to then being told I’m going into kidney failure. Also, I’ve had a couple of other key events in working with my physicians in which I was a very active participant; patients’ lives depend upon it. Your health is not something to mess with, and with some exceptions, it’s pretty simple to become actively involved in one’s own care.

I would also say for myself that the more I become involved with kidney disease, I realize that the expectations have been set very low for people with kidney disease, and that is something that must change. I think that’s more of a global effort that we are contributing to and that CJASN is contributing to – they’re very supportive of that.

Patient engagement is important for the nephrology community and for the future of the profession. The way to improve patient care is by advancing science and expanding clinical trials. Patients have to become actively engaged as partners in clinical trial development.

Q: What do you see as the greatest benefit of this new initiative?

A: I think the biggest benefit is seeing how people living with kidney disease view kidney disease research, compared to the researchers. Both ASN and CJASN truly value the patient voice, and it’s a great opportunity to acknowledge their efforts. It’s also a way for ASN and CJASN to place themselves in a leadership position, because I don’t think many other publications are doing this. It’s important to recognize what’s been done well at ASN and ask the rest of the community to up their game.

Q: How do you anticipate this could change clinical practice (if at all)?

A: As patient engagement increases through features such as CJASN’s Patient Voice editorials, patient awareness is elevated and leads to patients demanding more and hopefully, ultimately changing clinical practice. It starts with building upon PCORI and making sure we’re including patient voice and recognizing patients as stakeholders in their health and care.

Q: What advice would you offer other journals trying to engage patients in a similar way?

A: Trust the fact that there are many people that have the skills and the aptitude, despite not having a medical license, and encourage them to speak up. Instill confidence in them and be willing to give up some control because you can gain a lot in return. Some of the best doctors I know say ‘I listen to my patients, and my job becomes a lot easier’. It’s kind of the same thing and credit to ASN because I think they truly do listen to people and view people living with kidney disease and caregivers as partners in change. I don’t think it’s that hard; just try to get the ego out of the way and practice a little humility.

Q: Is there anything else you’d like to add?

A: The Patient Voice column is another example within ASN of having a patient voice strategy. ASN recognizes a need to change, recognizes the patient voice is crucial as a key strategic lever, and are supporting it in a variety of ways – Kidney Week participation, the Patient and Family Partnership Council through the Kidney Health Initiative, CJASN Patient Voice, to name a few– so there’s a really strong willingness to embrace the patient voice and that earns a lot of respect within the community.
 

If you are a nephrologist treating patients with kidney disease who you think may be good contributors to CJASN, or a patient yourself who would like to contribute, please contact Mr. Kevin Fowler by email at kevinjohnfowler@gmail.com or direct message him on twitter @gratefull080504.