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ESRD Beneficiary Focused Learning

Network Special Project

Messaging

Plan

February 17, 2012

Submitted to:

Sharon Last, Contract Office Technical Representative

Centers for Medicare and Medicaid Services

The Renal Network, Inc. ESRD Network 9

911 E. 86th Street, Suite 202, Indianapolis, IN 46240

Phone: 317.257.8265 Fax: 317.257.8291

HHSM-500-2010-NW 009C

TABLE OF CONTENTS

Developing the Message 1A. Educational Message(s) 1B. Target Audience(s) 2C. Identify Messaging Strategies 3D. Communication Vehicle(s) for Dissemination 4

Selected Messaging Plan 5 Appendices 8

A. Messaging Plan: Beneficiary Breakout Discussion B. Messaging Plan: Network Breakout Discussion C. Anemia Management Change Package Breakout Discussions

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THE RENAL NETWORK, INC. ESRD BENEFICIARY FOCUSED LEARNING NETWORK

NETWORK EDUCATION PLAN

I. Developing the Message

To communicate effectively, the ESRD Beneficiary Focused Learning Network (BFLN) must develop both short-term and long-term strategies for educational messaging and implementation or dissemination strategies using selected communication vehicles. The plan should distinguish:

1. Educational message(s) 2. Target audience(s) 3. Messaging Strategies 4. Communication vehicle(s) for Dissemination

A. Educational message(s)

What is the message?

Essentially an educational message must answer a question or a series of related questions that frame or advocate a set of positive behaviors or outcomes. The Fistula First Initiative is a prime example of identifying and defining the educational message. It simply asks:

1. What is the best vascular access? 2. Why should patients care about having the best vascular access? 3. Why should patients and health care team professionals act now to place AV fistulas in available

patient population? 4. What educational concepts and knowledge regarding AVF must be generalized? 5. What educational tools will assist patients? ...professionals …stakeholder entities?

Developing the messaging plan for the BFLN will involve more than one message. This special project has defined the goal of the messaging plan as “Develop a Beneficiary support and education plan that targets ESRD Beneficiaries and provides meaningful education with the goal of increasing Beneficiaries awareness and understanding of their anemia management and related quality of life issues.” The desired outcome is to “Effectively disseminate a messaging plan to increase the Beneficiary knowledge and self- management skills of anemia and a ‘second area of concern.’” In keeping with the model established by the Fistula First Initiative, the initial questions for the BFLN messaging plan on anemia might be:

1. What is the essential knowledge regarding anemia that every patient should have? 2. Why should patients care about anemia? 3. Why should patients and health care professionals act now to address anemia?

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4. What essential knowledge regarding anemia and anemia management must be generalized and understood by both patients and health care professionals to foster and encourage patient anemia self-management skills?

5. What educational tools will assist patients? ...professionals …stakeholder entities?

B. Target audience(s)

Who is the audience?

The ESRD beneficiary population is not homogeneous and can be segmented based on a variety of factors. Following are some characteristics to consider in determining how an audience may be segmented.

1. Demographics 2. Onset of kidney disease 3. Chronic disease condition including comorbidities 4. Choice of treatment options 5. Reading and educational level 6. Access to technology

What are your audience priorities?

Messages even on the same issue are more successful if they are tailored to the specific audience segments or sub-populations because they have different readiness, concerns and viewpoints on the issue. Recognize your audiences:

• Level of knowledge and awareness • Primary concerns and expectations • Perspective or approach to learning • Possible barriers to understanding • Readiness and/or ability to take action

What are the potential obstacles?

Messages will have to overcome barriers or obstacles to reach their intended audiences. Some obstacles will reside in the individual audience member, access to target group or medium.

Patients Facility • Lack of interest/motivation • Already doing too much/additional

burden • Lack of understanding of the

connection between actions and outcomes

• Lack of patient-centered environment reinforces reliance on professionals

• Lack of family involvement • Restricted family participation/outreach

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• Overwhelmed by disease or emotional effects of disease

• Failure to identify and accommodate patient participation in care management

• Limited access to and proficiency in media or technologies

• Focus on proprietary resources or channels of dissemination

How to identify and engage collaborative partners?

All organizations create messages within an environment. These organizations may be potential allies/facilitators, may be neutral or may offer active or passive resistance to the message. Developing collaborative partnerships is an important way to engage other organizational participants and build cohesion within the environment that the particular message is to be delivered. Collaboration also acts to identify, recognize and engage organizations regarding their role/responsibility in achieving success in delivering the message. Some important partners for the BFLN are:

• Centers for Medicare and Medicaid Services (CMS) • Networks and Network Patient Advisory Committees (PACs) • Renal Organizations (especially organizations with existing educational tools) • Renal Patient Organizations (especially organizations with central mission of patient

participation and education) • Large Dialysis Organizations (LDOs) and non-LDOs

C. Identify Messaging Strategies In the Technical Expert Panel (TEP) discussions, (including patient and Network representative breakout sessions and joint discussion) there was a tendency to identify messaging strategies with actual communication vehicles. The following is an attempt to sift out messaging strategies as they pertain to knowledge, audience and approach.

• Generalized Knowledge o Simple, basic and accessible information o Layered and incremental learning o Knowledge repository

• Targeted Audience o Chronic Kidney Disease (CKD) o New patients o Existing patients o Patients in transition o Patients with both physical and emotional barriers

• Concentrated / Focused Approach o Patient to patient o Effective communication

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D. Communication vehicle(s) for Dissemination To identify appropriate specific communication vehicles, it is important to begin with a decision-making strategy.

1. A patient-centered approach must be maintained in identifying, developing and disseminating each type of outreach/training resource. The aim would be a messaging plan with patient educational materials leading the way and staff receiving assistance on how to best approach patients and effectively communicate educational objectives.

2. Each outreach/training resource where possible must reflect a low tech and high tech approach. 3. Each outreach/training resource where possible should incorporate existing resources. 4. The method of delivery and dissemination must include a timeline for development and

implementation. Outreach/training resources must be discussed and assessed according to the BFLN special project’s ability to deliver within the project contract period. Notable outreach/training resources that require efforts beyond the contract period may be outlined for future development and incorporated into the recommendations for the Communication and Outreach Report.

5. Each outreach/training resource must include learning objectives and some may require learning objectives for each learning component. For example, a suggestion was made to provide education in an interactive, Internet-based interface using a non-linear model with point-and-click quizzes and a layered, incremental approach to knowledge building. Evaluation would require both an assessment of an individual component, combination of components and all components together.

6. Each outreach/training resource must be compatible with the aims, goals and guidelines of the ESRD Networks scope and activities. Where policies and guidelines do not exist, an effort should be made to develop a basic operational procedure. For example, a Facebook page has been identified as a potential communication vehicle. There are Facebook rules which govern participation by not-for-profits. BFLN should implement these policies and guidelines which address its ability to conform to Facebook policy and how BFLN will administer and monitor participation to ensure compliance.

For an overview of the multiple messaging strategies and communication vehicles discussed and elaborated during the TEP meeting in Baltimore, please refer to the following appendices:

• Messaging Plan: Beneficiary Breakout Discussion • Messaging Plan: Network Breakout Discussion • Anemia Management Change Package Breakout Discussions

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II. Selected Messaging Plan

As previously discussed, the BFLN will focus on messaging strategies which target the patient population and reflect available resources that exemplify best practices. The TEP members discussed the need for this project to bring together the existing tools developed by Networks and other renal organizations and incorporate them into one comprehensive knowledge base or “library”. Unlike other toolkits or compendium of resources, this library would feature Web-based interactive learning modules. A self-direct, layered-learning approach would allow users to select from available resources choosing just how much or how quickly to move through the content. The BFLN holds as its vision a virtual dialysis center with a library, waiting room, treatment area and other learning areas such as the doctor’s or other professional office. The opportunities for future learning environments may extend into the community with a patient home setting showing home hemodialysis as well as developing caregiver and other family concerns. Other scenarios such as a hospital setting could include transplantation, emergency room dialysis treatment, transition of care issues and infection issues. Each setting would provide a variety of media for learning including text, images, interactive and non-interactive animations, audio and digital videos. Information would be presented at different levels: easy, moderate and in depth with each step presented as an opportunity to deepen and to increase the knowledge of the subject area. Materials would be presented in a step wise fashion with quizzes for each section to determine mastery of information.

The first step in creating this virtual learning environment would be a simulated library housed on the Web. This library would be centered on the educational components included in the change packages for this project including anemia management. Once identified, the second change package topic will be added to the virtual library.

An essential component to this virtual learning environment will be the creation of an animated figure that will serve as host and guide to this virtual learning environment. This animated character will introduce materials, present content, provide direction and offer positive reinforcement and motivation. As with most virtual environments, the user may select to use or ignore features and make library content available in a more conventional format. As the project progresses, more shelves and topics may be added to the library and more rooms, until the virtual dialysis center is realized. The following are illustrations of what a virtual setting may look like and how a similar setting may be developed for the dialysis patient population.

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Library

For the purposes of the BFLN contract period, the first step would include the creation of a simulated library on the Web housed with the resources from the change packages that were identified by the TEP. This simulated library will act as the cornerstone for the Beneficiary Focused Education Plan.

Meeting Room

Future development of the virtual dialysis center might include a meeting space for modeling interdisciplinary healthcare team meetings highlighting patient participation and interaction on care plan development, self-management issues and resolving questions and concerns. Videos may be shown in a meeting room with an overhead projector as part of a training session or a general education meeting.

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Medical Room with Teaching Charts

Future development of the virtual dialysis center might include a medical room with charts on CKD stages and development, charts on vascular access options and management including self-management options such as self-cannulation.

The creation of a central repository of knowledge has been successfully used as a model for education and dissemination of tools. Fistula First is a perfect example. The BFLN proposes to take this successful model and extend it into a virtual dimension which will be educational, engaging and interactive. It is expected that the virtual library will address the issues identified by the TEP especially the beneficiary members that learning should be fun and accessible to the patient at a time when they are ready and in the portions and measure that they are able to assimilate. The BFLN expects that the virtual library as a first step towards the virtual dialysis center will accomplish these aims and more.

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Appendices A. Messaging Plan: Beneficiary Breakout Discussion

B. Messaging Plan: Network Breakout Discussion

C. Anemia Management Change Package Breakout Discussions

Appendix A

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ESRD Beneficiary Focused Learning Network Special Project Baltimore Technical Expert Panel (TEP) Meeting

Beneficiary Support and Education Messaging Plan Beneficiary Break-Out Discussion Meeting Date: January 19, 2012

General Principles for Education Plan

• All have access • Input from everyone – plan written by community, keep abreast of patient input by creating

blog for TEP patient group • Speak one language – patient and professional, age sensitive • How are we sending the message out – reach patient blogs • Concern with negative / incorrect information • Assessment of learning readiness • Layered learning • Basic yearly reminder of kidney issues • Address barriers – Denial (info doesn’t stick), Depression (not ready to hear)

Discussion Areas

1. Educational Activities – a) Not one size fits all, b) recommend development using all avenues for the benefit whole population c) Kidney School model – implications for patients with no access to Web

2. Make Activities Fun –

a) Peer support group and group learning activity (educational bingo) b) Learning Network Channel for TV

3. Opportunities for Education Using Technology –

a) Al Bumin Man - 10 min module on TV (FMC) b) Good idea “Raptivity” – a presentation on Raptivity® software used to quickly and easily

create learning interactions such as games, simulations, brainteasers, interactive diagrams, virtual worlds and more. You can embed these interactions right into your online courses to improve learner engagement.

c) Videos

4. Use of Blogs and Other Social Media a) BFLN blog b) Individual patient blog (need technology education for use of Facebook and Twitter) c) Responding to existing blogs as test of building online community

Appendix A

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Beneficiary Support and Education Messaging Plan Beneficiary Break-Out Discussion Meeting Date: January 19, 2012

Discussion Areas - Continued

5. Reach Out to Partners – a) How to support patient representative/facility staff doing activities (PAC Report) b) Consider how to have buy-in from facilities business models for messaging (e.g. show how

educational activities improve patient outcomes and affect bottom line) c) Let LDOs and renal organizations know what BFLN is doing, emphasis resource sharing d) Explore how integrated is TOPS at the facility level? Identify opportunities for supporting

and integrating with facility-based educational efforts. e) Target integral staff for discussions on patient-centered and approach to education

Appendix B

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Beneficiary Support and Education Messaging Plan Network Representative Break-Out Discussion

Meeting Date: January 19, 2012

1. Learning Network - A suggestion was made to establish a collaborative community television channel that would disseminate Network information to ESRD Beneficiaries.

2. Dissemination Barriers – The TEP discussed the fact that the majority of dialysis patients receive treatment from a Large Dialysis Organization (LDOs) and the challenge that exists as a result of LDOs persuasion to administer the messaging content.

3. Best Practices – A suggestion was made to review the work that has been performed by Project RED, a research group at Boston University Medical Center that develops and tests strategies to improve the hospital discharge process in a way that promotes patient safety and reduces re-hospitalization rates. The RED (re-engineered discharge) intervention is founded on 11 discrete, mutually reinforcing components and has been proven to reduce re-hospitalizations and yields high rates of patient satisfaction. Virtual patient advocates are currently being tested in conjunction with the RED. In addition, Project RED has started to implement the re-engineered discharge at other hospitals serving diverse patient populations.

4. A recommendation was made by the TEP to work collaboratively with LDOs to disseminate messaging plan to ESRD patients. It was suggested that the Learning Network convene stakeholders to develop a messaging plan and conduct a pilot testing prior to pushing out the message to facilities.

5. A recommendation was made by the TEP to establish a series of Learning Modules that provide Beneficiary education that spans from Pre-ESRD to Post disease.

6. Knowledge Base – The TEP recommended the development of a repository for patients that includes Frequently Asked Questions (FAQs) in an interactive format that utilizes videos and provides links to specific questions.

7. Educational Activities – The TEP recommended the use of educational activities (i.e. games, apps, etc…) to promote Beneficiary education.

8. The TEP recommended that the Learning Network utilize existing tools that have been

developed by other Networks to disseminate the messaging plan to Beneficiaries.

Appendix B

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Beneficiary Support and Education Messaging Plan Network Representative Break-Out Discussion

Meeting Date: January 19, 2012

9. Technology Education – The TEP recommended that training courses be made available to patients via a website and include an interactive platform similar to the one used by Buccaneer to conduct technology education.

10. Social Media – The TEP discussed the barriers that currently exist for publishing social media on a Network website as a result of the regulatory requirements to comply with Section 508 compliancy standards, policies and procedures. The TEP discussed CMS’ recent use of Twitter to promote the December QualityNet meeting and suggested that we explore the use of Twitter as a possible vehicle to promote Beneficiary education.

11. Data Collection - The TEP discussed the need to identify what tools are being used to collect and review data in addition to the contact information currently collected in the NCU. It was recommended that each tool be evaluated to include in the NCU in an effort to standardize the data collection process.

12. Dissemination Strategies – The TEP recognized that an effective messaging plan should utilize a mix of both an analog (low-tech) and digital (high tech) methods to disseminate the messaging plan.

13. Communication strategies – The TEP discussed the need to engage the entire ESRD community and recommended that the Learning Network establish collaborative partnerships with various patient organizations and LDOs in an effort to capitalize on resources and disseminate a messaging plan in the most effective manner.

Appendix C

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Anemia Change Package Break-Out Discussions

Meeting Date: January 19, 2012 Anemia Change Package - Beneficiaries Overview: Reviewed anemia information and products available to professionals Reviewed anemia information and education available to beneficiaries Discussed the Fistula First Change Concepts as a successful change agent model realizing it was developed for professionals adding a patient piece later Keep it simple:

• What is anemia? • What does the “word” mean? –use a simple and easy to understand definition • Why am I anemic? • Give choices for treatment • Relate symptoms of anemia to kidney disease

Questions that can get to a patient and professional partnership: Ask - Who, What, Why, Where, and When

1. What’s wrong? 2. What can we do about it? 3. What does the future hold?

Simplify the education, especially early on, because the patient is not in a healthy position to understand:

• Can’t think straight • Very ill • Uremic • Anemic • Depressed

Layered Education:

• Constant “Drip” • Right information at the right time - How much information is enough? - How often to educate? • Get the patient’s attention – “Teach Back” technique for the professionals • Address and educate the patient while experiencing the symptoms • Use patient stories on being anemic • Patient to patient interaction feels like family • Speak like a patient • Realize patients have other “life issues” as well as health issues • Start with the basics – “This is how you put your socks on” Coach Wooden and Vietnam survival

Appendix C

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Meeting Date: January 19, 2012 Beneficiaries - Continued Relate education to what is known – analogies and metaphors:

• Use pictures to express the message/education • Depict how an anemic patient feels through pictures – • Tired with slumped shoulders • Droopy blood cells • Too few red blood cells compared to normal red blood cells • Picture a machine (possibly a heart shape) with a conveyer belt with red blood cells. There

could be iron bars (depicting iron management) going into the machine and liquid marked EPO going into another area. A pressure gauge could show Hgb ranges as good (10-11, green), caution (<10, yellow), and danger (12 and >, red). This is one example of using what is known or analogies for education.

Resources for analogy picture education:

• Shari Gilford – artist and kidney patient • Peter “Rock and Roll Star” Quaife (The Kinks?) – Book of kidney patient comics • MEI – Medical Education Institute

FDA Issues related to Hgb:

• <9 Hgb most patients feel lousy • >12 Hgb increases risk for heart attack or stroke • Stop EPO at 11Hgb and patients drop Hgb so there is a roller coaster effect • DOPPS reports that EPO has decreased by 15% • 1% of the population has had a drop in Hgb • 0.8% of patients are reported to be <9 Hgb • Transfusions have increased but not significantly

How can patients and families keep their eye on the Hgb level? – empowerment

• Be able to talk with Dr. regarding individual quality of life • Understand risks and benefits of transfusion • Fluid overload • Decreased chance of transplant • Understand what motivates the patient • “Do you want to learn about…….? Ask me” • Educational Gaming • Use “Know Your Number” for anemia

Education strategies for the blind:

• CDs • Audio patient stories about being anemic • Storytelling • Using music for expression

Appendix C

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Meeting Date: January 19, 2012 Beneficiaries Continued Dissemination Timeline:

1. Initial information – include what the future holds, prognosis 2. 2-3 months after starting dialysis begin slow digestion adding information regularly 3. Continued education at least yearly

Final Thoughts:

• Repetition is important – it sometimes takes up to 6 times or more of hearing the same information to understand

• Spoon feed vs shoveling the information • Begin problem based learning – teach when the patient needs the information and is ready to

hear it • Patient might not be ready to hear about it when the professional wants to teach it • Use family members as a conduit • Navigator model would work for patients without a support system

2nd Change Package:

1. Fluid overload Too much salt

2. How kidney disease can lead to heart disease Congestive heart failure

3. Mineral Metabolism Management Effects on heart, organs, and kidney disease

All three relate back to how kidney disease can affect the heart and /or lead to heart disease.

Appendix C

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Meeting Date: January 20, 2012 Anemia Change Package - Professionals Virtual box on a Web site with links to available resources

• Already available resources • Instructional sections for patients, professionals, family members • Patient stories for professionals – describing the devastation of anemia before EPO • Dangers of blood transfusion – both for professionals and patients – “10 warning signs” • Help patients understand the need to avoid blood transfusion • QOL is key – need to address the appropriate Hgb for QOL • Iron management • Facility education – Teach, don’t preach • An educated or questioning patient should not be viewed as a threat (professionalism and

sensitivity training – RPA tools, Network tools) – have to be used to be successful • Patient education – step by step on how to interact with you care team • Professionals have to understand not to de-sensify • Educate on “Teach Back” for professionals • Best practices on how professionals are to interact with patients – Drs. seeing patients on

dialysis, etc. • Include technician training • Change from IV to Sub-Q EPO/ESAs due to reimbursement issues • Turn this into fun

Communication

• Communication is a big problem – effective communication, relationship building • Train the trainer package regarding communication skills • Teach for empowerment and patient and professional relationships • Ask - Who, What, Why, Where, and When

a) What’s wrong? b) What can we do about it? c) What does the future hold?

• Patient ambassadors/navigators for education • Facilitator training for people in facilities to assist with communication and sensitivity training

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