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Patient Involvement

Patient Engagement Learning and Action Network (LAN)

When CMS introduced the redesigned ESRD contract in January 2013, one of the most striking and welcome features was the strong focus on engagement by patients in their own health care.  Because this process was a relatively uncharted path, CMS wisely called for the formation of learning laboratories known as Learning and Action Networks (LANs).  These are committees composed mostly of ESRD patients whose combined knowledge and experience in the subject matter of their own illness and health can forge a deeper understanding of what can be gained by being an active partner in collaboration with the professional health care team.

The strategy of the LAN is to consciously manage knowledge as a valuable resource.  Bringing together patients, family members, facility staff, and Network personnel, they create opportunities for in-depth learning and problem solving so that learning can take place among all stakeholders.  That learning can then be spread to others to magnify the gains from the work of the LAN.

CMS called for broad outreach to facilities in order to find a minimum of 10 patients to serve on the LAN. Current LAN members come from all areas of the Network.

Currently there are 20 patient members of the LAN, and in honoring the life experiences of patients, committee members are referred to as subject matter experts (SMEs). Additionally there are 2 family members and four staff members on the LAN.  Patients on the LAN represent those dialyzing in-center, at home on peritoneal dialysis, at home on hemodialysis, and those who are transplanted.

LAN members will meet face-to-face once a year and every other month by conference call.  The LAN was charged with the following goals:

  1. Design and implement a quality improvement activity (QIA) that promotes patient-centered care and protects the interests of the beneficiaries, such as a QIA that focuses on empowering patients to share in decision-making, enhancing quality of life and exploring treatment modalities such as home hemodialysis.
  2. Develop two educational campaigns that develop learning materials for beneficiaries such as materials focused on health literacy, effectively navigating the dialysis system, treatment modalities, disease management, heart healthy living, ways to optimize quality of life, patient safety, promoting vaccinations, reducing disparities, increasing appropriate transplant referrals, reducing IVDs, or other patient centered goals.

Quality Improvement Activity

For the 2014 Quality Improvement Activity, the LAN chose Increasing Patient Involvement in the Care Planning Process.  The project hopes to bring more patients into the care planning process by offering a simple checklist of questions to help them select topic areas where they may have concerns:  Thirty-seven facilities have been chosen to participate in the QIA.  They will receive a project binder which includes monthly report forms to send to the Network along with the project checklists and a flyer describing the importance of patient’s being involved in their care.  Facility staff are asked to give the patient a copy of the flyer along with the checklist prior to their annual and 90 day care conferences.  Project materials include:

Letter to facilities

Project Flyer

Project Checklist

Campaign  #1

The first campaign chosen for 2014 is  Understanding Lab Values:  Saving My Heart:  The goal of this campaign is to help patients better understand the correlation between bone disease management and heart calcifications.  109 facilities have been chosen to take part in the project.  A poster has been developed asking the question, “Do You Know that You Could Have a Bone in Your Heart”.  The poster will be displayed in the facility lobby.  Patients who have questions will be directed to talk to their dietitian and will be given a brochure explaining the importance of phosphorus control.  Project materials include:

Letter to Facilities

Campaign Brochure

Campaign Poster

Additional Resources:

Patient Tips for Healthy Living - Phosphorus

Why to Comply? - Know Your Medicines

Why to Comply? - Knowing Your Lab Work

Campaign #2

The second campaign chosen was the Missing Minutes Adherence CampaignThe LAN selected this campaign based on their observation at the dialysis facilities of the patients who miss or shorten their dialysis treatments. Sixty-one (61) facilities were chosen to participate in the campaign.  The goal is to provide patient and staff educational materials about the consequences of shortened and missed dialysis treatments and enhance patient quality of life.  Facility staff members were invited to participate in an introductory webinar featuring a clinic manager and social worker who had previous experience with decreasing missed treatments at their facility. The webinar included an overview of the campaign and distribution methods of the educational materials for the patients and staff. Monthly, the identified facilities will provide the number of patients they have provided the educational materials. Materials developed for the project include:

Letter to facilities

Campaign Brochure

Campaign Poster

Webinar Recording

Patient Advisory Committee

The goal of the Network 8 Patient Advisory Committee (PAC) is to assist Network 8 in promoting patient-centered quality care.  The PAC has an opportunity to impact the quality of care that patients receive in the dialysis facility by providing input to the Network and its Boards on the concerns and needs of kidney patients. It serves as the voice of the Network’s patient population.

Activities and Obligations
PAC members select a specific project to focus on each year and work to see that project to completion. The PAC helps define the best means of reaching their fellow patients and can help inform the Network of how to better educate patients and better ensure that the information is provided in a patient-friendly manner. The PAC contributes articles and ideas for inclusion in the Network 8 patient newsletter, Kidney Patient Update.

PAC members participate in several conference calls each year and attend face-to-face meetings when scheduled. As funding permits, Network 8 pays travel expenses to attend face-to-face meetings. Members can serve 2 consecutive 3 year terms.

Committee Membership
The 8 – 12 member PAC was formed in 2006 and is made up of persons receiving dialysis and those with a functioning kidney transplant. This committee represents the Network 8 area demographically and includes various treatment modalities.

There are two ways of becoming a PAC member.  Patient members of the Board of Directors and Medical Review Board serve on the PAC by virtue of being on those committees.  Others are   recruited from the Network’s patient facility representatives, and any other patients who are interested can apply. Committee members can self-nominate, and self-nominations must include a letter of recommendation from a renal professional. Nominated patients are elected by the Board of Directors.

If you are interested in applying for membership on the PAC, click on this link to download and print an application form.

Facility Patient Representatives

Each facility is asked to name one patient to serve as a Patient Representative.

Patient Representatives may be asked to:

  • Participate in patient focus groups for Network 8
  • Act as a mentor to other patients
  • Introduce patients to Network activities and publications
  • Help patients understand their rights and responsibilities
  • Help distribute the patient newsletter
  • Suggest topics for patient meetings
The Network provides Patient Representatives with material from the Patient Advisory Committee, as well as other educational materials. Patient Representatives may be asked to distribute that information to the other patients in the facility.  Click here for the Patient Representative Handbook.