Listening to Our Constituents What professionals & patients are saying they want from our programs...

Listening to Our Constituents


What professionals & patients are saying they want from our programs

Gigi Politoski, SVP for ProgramsTracy Fortson, Managing Director,

Constituent ServicesHolly DeVan, Managing Director, KLS



• NKF has the reputation of developing programs that fill a need and get used

• NKF embraces the philosophy that programs should be developed for the user by user

• Funders require that the need for a program is substantiated and well documented

• “In God we Trust, All Others Bring Data”



NKF Program Philosophy

• Based on documented NEED• Doable• Measurable• Fundable


Listening to Our ConstituentsNKF has Built in Advantages

• Patients/Professionals and the general public feel comfortable sharing with NKF

• NKF has a built-in system for gathering and documenting what its constituents will benefit from when it comes to programs and services – Mail– Switchboard – In-person interaction at meetings, special

events – Web

• People willingly provide input just because NKF “asked”

• Most industry related activities are based on the opinions of 5-20 patients or physicians


Listening to our Constituents

• Share highlights of what we did• What we found out• How we used the information to develop

programs and get funding

2007 NKF Needs Assessments (Market Research)


Transplant Recipients Tell Us About Cancer

Cancer After Transplantation: The Problem

Cancer (of a wide range of types- skin,

digestive, reproductive, kidney, lymphoma…) is a leading cause of death for transplant recipients


2006 NKF Survey of Transplant Recipients

• Determine what the transplant recipients know—or think they know—about malignancy and identify their educational preferences

• Use this insight to effectively communicate with transplant recipients about this issue


Methodology

• Focus groups provided qualitative data. Groups were held in Jacksonville, Dayton and San Francisco. Separate groups were held for those with cancer and those without

• A written survey was mailed and e-mailed to recipients about the cancer experience. 409 respondents – 70% return rate)

*********• Publication of Findings accepted in Transplantation, 4-27-08

(Kauffman, Woodle, Cole, Paykin) • Presentation prepared for the International Congress of the

Transplantation Society Pre-Con., August 08 (Paykin, Coorey)


Survey Findings Cancer Incidence Rises the Longer

the Transplant Lasts

53%

50%

42%

25%

0% 20% 40% 60% 80% 100%

23+ years out

10-22 years out

6-9 years out

< 6 years out


Only 1/3 Recall Being Told About the Cancer Risk Pre-Transplant

11%

16%

27%

24%

24%

14%

12%

23%

0% 20% 40% 60% 80% 100%

Hadn't heard before now

Other

Quite some time post-transplant

Shortly after transplant, after hospital

In hospital post-transplant

While on waiting list

When added to waiting list

When first heard about transplantation

36% Learned Pre-Transplant

43% Learned Only After Transplant


Many Don’t Discuss Cancer Regularly with their Doctor, Including 22% of Cancer Survivors

19%

48%

30%

27%

30%

28%

12%

11%

11%

30%

7%

13%

10%21%

4%

0% 20% 40% 60% 80% 100%

Never had cancer

Cancer survivor

All patients

On last visit Within past 12 months

More than 12 months ago Never

Don't remember


Rejection & InfectionMore Worrisome than Cancer

20%

24%

25%

29%

37%

42%

31%

38%

39%

44%

38%

35%4%

7%

6%

15%

11%

17%

19%

17%

21%

21%

26%

32%

- 70% - 50% - 30% - 10% 10% 30% 50% 70% 90%

Diabetes

Heart disease

Bone disease

Cancer

Infection

Organ rejection

Don't worry much No worry at all Worry a lot Worry some

23%

Not a worry

24%

27%

36%

37%

49%


They Are Less Confident of their Cancer Prevention Knowledge

14%

25%

37%

34%

34%

37%

34%

38%

45%

58%

48%

7%

10%

10%

10%

8%

13%

14%

13%

13%

15%

8%

14%

29%

31%

31%

36%

33%

33%

8%

8%

11%

11%

7%

- 80% - 60% - 40% - 20% 0% 20% 40% 60% 80% 100%

Prescription drugs

Weight

Eating habits

Skin tone

Exercise

Family history

Exposure to sun

Smoking

Know some Know little Know nothing Know all Know a lot

15%

Education Gap

17%

41%

51%

55%

55%

56%

58%


Cancer Prevention Steps: Not Well Known, Even After

Diagnosis

60%

72%

93%

37%

77%

82%

76%

59%

86%

97%

48%

91%

82%

86%

0% 20% 40% 60% 80% 100%

Breast/ testicle self-exam

Skin self-exam

Not smoke

Suggest dr. try somethingdifferent with meds.

Screening tests

Annual physical

Ever gave PCP family cancerhistory

Cancer survivorNever had cancer

Past 12 mos.

Past 30 days


They Welcome Many Educational Formats

Including Forum Discussion Groups 43%

12%

25%

38%

38%

43%

45%

59%

64%

0% 20% 40% 60% 80% 100%

Other

Slide show/ video

Support group

Class/ seminar

Forum with groupdiscussion

Internet

Booklet

One-on-one


52% Find Value in Meeting with Peers

12%

18%

25%

17%

22%

38%

48%

57%

25%

25%

23%

32%

46%

35%

28%

36%

9%

15%

4%

8%

10%

10%

12%

7%

22%

21%

9% 8%13%

- 60% - 40% - 20% 0% 20% 40% 60% 80% 100%

Other

Pharmacist

Friend/ family member

Transplant support group

Association

Magazine/ journal

Web site

Transplant center

My doctor

Not very useful Not at all useful Very useful Somewhat useful

7%

Not useful/ used

23%

27%

31%

50%

52%

56%

62%

80%


Peer Learning is KEY . . .

The 52% who use support groups indicated that doctors often don’t have enough time for in-depth discussions and that this need is met by meeting with peers who provide invaluable support and information about how to cope and maximize health


Coffee House Conversations™

• A gathering of people who have come together to explore a topic of significant meaning to them

Reducing the Risk of Cancer Understanding Depression Empowerment and Advocacy Preparing for and Coping After

Disasters

• Each group was co-facilitated by a recipient and social worker and focuses on interaction rather than lecture as the mode of learning.


Jan 07-Feb. 08 Coffee House Conversations™

Pilot Test Successfully Completed by:

• NKF of the Alleghanies• NKF of Colorado• NKF of Minnesota• NKF of Georgia• NKF of Louisiana • NKF of Central New York• NKF of Northeast New York• NKF of Greater NY• NKF of Western NY• NKF of East Tennessee


Kidney Learning System Tools: Patient and Professional


The recipient as Educator and Facilitator (Empowered Patient)

Your role as a co-facilitator is of the utmost importance. As a peer leading your peers, you can inspire trust, hope and be a role model for an empowered person. Although it is clear that the experiences of one person are never replicated in another, it is also true that the concept of I’ve been there too, perspective is powerful… - from the Coffee House Conversations™ Program Book, adapted from the NKF Peers Program Training Manual, 1999


NKF of East Tennessee Coffee House Conversations™ Discussion Room


Diabetes Needs Assessment Survey

What do Patients Know about CKD?

What are their Educational Needs?

How well are they Managing their Diseases?10,000 surveys were mailed to the NKF

Kidney Early Evaluation Program (KEEP) participants’ database targeting people

with diabetes and Chronic Kidney Disease (CKD) stages 3 and 4

(eGFR<60mL/min./1.73m2)


Findings from KEEP participants re: DiabetesBehaviors

59% were not able to keep to a recommended diet

81% were not able to get recommended exercise

64% were not able to keep blood sugar within recommended target


Findings from KEEP participants re: Diabetes

Knowledge

60% do not have enough information about diabetic kidney disease

67% do not have enough information about kidney disease caused by diabetes, and about available treatment

52% do not have enough information about recommendations for blood pressure in diabetes



Knowledge61% do not have enough information

about the association between heart disease and kidney disease

70% do not have enough information about anemia in kidney disease

63% do not have enough information about recommended cholesterol and triglycerides for people with diabetes



For People with Diabetes And CKD:• 56% do not have enough information

about recommended exercise and activity • 72% do not have enough information

about medications• 74% do not have enough information

about nutrition • 85% do not have enough information

about clinical trials • 74% need more information on diabetes

and chronic kidney disease


Diabetes Survey – KEEP Participants findings

A gap in knowledge was revealed when > 50 % of respondents did not have enough information to help them manage their disease, or follow recommended advice.


Applying the Information Learned to Create Educational Programs:

Diabetes Guidelines Caddy Full text Manual – Print & CD

Stage 1-4 Professional Tool

Stage 5 Professional Tool

Clinical Handbook

Diabetes Educator Resource

Patient Bookmark

Patient Education Booklets: Stages 1-4, Stage 5:

English and Spanish


Findings from KEEP participants re: Diabetes: One Survey = Multiple Resources for Multiple Audiences

• Gaps in knowledge were used to define and create KLS implementation materials for the Diabetes and CKD Caddy

• Applied patient responses to develop curriculum and resources for professionals to “teach” the patients

• What patients tell us informs the need for professional programs

• Used to Create knowledge and behavioral tools for patients


Patient Tool: Bookmark Emphasizing Key Messages about CKD Risk and

Managing Blood Sugar


Professional Tool for PCP: Why, When, How to Screen for CKD


Teaching Tool for Diabetes Educators


Key Messages for Patient Care for PCP and Nephrology

Clinicians


Patient Education With Key Messages from the Survey


“For the User – By the User “Surveyed Patients and Used Their Quotes in Writing the Books and

Designing Content


Professionals Tell Us About Their Learning Needs

Opportunities to ListenProgram Evaluation Forms: Checklists and

Open Ended QuestionsFormal Surveys: Paper and Online

By Discipline or By TopicInformal: Advisory Meetings Agenda Topic,

KEEPS, Community meetings and booths


Most Frequently Requested Topics for KLS Program Across

all Disciplines

• Diabetic Kidney Disease• Malnutrition

• Hypertension• Inflammation

• Infection• Bone Disease

• Lipids and CVD


2007 Physicians

0 7 14 21 28 35 42 49 56 63 70

Other

CKD Complications/ Comorbidities

Patient Ed/Adherence

Depression

Inflammation

CKD Risk Awareness

Infection

Adequacy of Dialysis

Kidney Transplant

Diabetes

Dyslipidemia

Malnutrition

Anemia

Diabetic Kidney Disease

Cardiovascular Disease

Autoimmune Disease

Glomerular Disease

Abnormal Calcium and Phosphorus

Hypertension


2007 Nurses

0 20 40 60 80 100 120 140 160 180 200

Other




CKD Risk Awareness

Dyslipidemia



Anemia

Glomerular Disease

Diabetes

Malnutrition

Depression

Kidney Transplant

Inflammation

Autoimmune Disease

Hypertension


Infection


2007 Dietitians

0 50 100 150 200 250 300 350 400 450 500

Other




CKD Risk Awareness

Depression

Glomerular Disease

Anemia

Kidney Transplant


Autoimmune Disease

Dyslipidemia

Diabetes


Infection

Inflammation

Hypertension

Malnutrition



2007 Nurse Practitioners

0 3 6 9 12 15 18 21 24 27 30

Other


Patient Ed./Adherence


CKD Risk Awareness

Depression

Kidney Transplant

Inflammation

Anemia

Diabetes

Dyslipidemia

Abnormal calcium and phosphorus

Autoimmune Disease

Malnutritoin

Infection

Glomerular Disease


Hypertension



2007 Pharmacists

0 1 2 3 4 5 6 7 8 9 10

Other



Depression

Malnutrition


Infection

Glomerular Disease

Diabetes


Autoimmune Disease

CKD Risk Awareness

Dyslipidemia

Kidney Transplant

Inflammation

Anemia

Abnormal calcium and phosphorus

Hypertension



2007 Social Workers

0 1 2 3 4 5 6 7 8 9 10

Other



Infection


CKD Risk Reduction

Inflammation


Diabetes


Depression

Glomerular Disease

Hypertension

Malnutrition

Anemia

AutoImmune Disease

Dyslipidemia

Kidney Transplant

Patient Ed./Adherence


2007 Transplant Coordinators

0 1 2 3 4 5 6 7 8 9 10

Other

Inflammation


Dyslipidemia

Glomerular Disease

Malnutrition

Hypertension

Autoimmune Disease

Infection

Depression

Diabetes



Anemia

Kidney Transplant


2007 Total

0 50 100 150 200 250 300 350 400 450 500

Other




CKD Risk Awareness

Depression

Glomerular Disease

Anemia

Kidney Transplant


Autoimmune Disease

Dyslipidemia

Diabetes


Infection

Inflammation

Hypertension

Malnutrition



Most Preferred Educational Formats

Webcast or online activity with audio

and slides10%

Webcast or online activity with video, audio and slides

13%

CD-Rom14%

Online Monograph (ie PDF)

12%

Printed Monograph

11%

Live Symposium40%

Live Symposium

Webcast or online activity with audioand slides

Webcast or online activity withvideo, audio and slides

CD-Rom

Online Monograph (ie PDF)

Printed Monograph


Preferred Day

Friday17%

Saturday16%

Sunday8%

No preference12%

Weekdays (Monday, Tuesday,

Wednesday, Thursday

39%

Sunday8%

Weekdays (Monday, Tuesday,Wednesday, Thursday

Friday

Saturday

Sunday

Sunday

No preference


Preferred Length/ Time

Half day - morning (8am -

1pm)40%

Half day - afternoon (12pm -

5pm)19%

Half day - evening (6pm - 10pm)

6%

Maximum 2-3 hours - Morning

13%

Maximum 2-3 hours - Afternoon

10%

Maximum 2-3 hours - Evening

12%

Half day - morning (8am - 1pm)

Half day - afternoon (12pm - 5pm)

Half day - evening (6pm - 10pm)

Maximum 2-3 hours - Morning

Maximum 2-3 hours - Afternoon

Maximum 2-3 hours - Evening


What attracts you to a CME/CE seminar

Topic49%

Number of credits10%

Renowned faculty12%

Networking opportunities

8%

Opportunity to piggyback

symposia with vacation

5%

Desirable city16%

Topic

Number of credits

Renowned faculty

Desirable city

Networking opportunities

Opportunity to piggybacksymposia with vacation


Are you willing to attend live seminars with health professionals from multiple disciplines?

Yes82%

No4%

Occasionally14%

Yes

No

Occasionally


Hope Street – Gaining Community Buy-In

• Survey Professionals and Patients – Looking for the “behavioral” and “human interest”

• Share the Feedback• Editorial Board• Pre-Launch Awareness Campaign: Sneak-

Peek, Buttons, Emails, Sign Up• Distribution and Launch at Major Events• Feedback Cycle and Adjust Content


CONFIDENTIAL


Hope Street Professional Survey• What attracted you to the field of dialysis?• What is the greatest reward of working with dialysis patients?• What is the greatest challenge of working with dialysis patients?• What is the most important fact a new patient should know about dialysis?• What is the most important fact that a peer new to your field should know about

dialysis patients?• Describe one or two colleagues that you admire and let us know why.• What is the most common misconception about dialysis among new patients?• What is the biggest ongoing concern of patients on dialysis?• Do the families of your dialysis patients generally get involved in treatment? Do you

encourage them to? Do they come to the dialysis center with the patient?• How do you try to change the behavior or patients who don’t comply with their

treatment?• Does your center organize patient groups to provide peer-to-peer support? If yes,

how are they working?• Describe ways in which you try to motivate patients/make them feel part of a team,

etc.• How do you meet the educational needs of patients? • What tools might be helpful to education patients?• Describe one or two patients in the unit who other patients look to for advice. What

characteristics/traits do they possess?• Please provide examples of any social activities your center organizes for patients.• How does your center communicate the passing of a patient to other patients?• What helps you cope with the emotional challenges of treating chronically ill patients

every day?


Hope Street – Patient Survey• How did you feel when you first learned you had to go on dialysis? How have your

feelings changed since then? What helped you the most to cope with those feelings?

• How has dialysis affected your relationships with your family and friends? • How has dialysis changed the way you view yourself? • If you could tell a newly diagnosed patient one thing about dialysis, what would it

be?• If you could tell a nephrologist one thing about dialysis patients, what would it be?• How have other patients helped you, or how have you helped other patients, learn

about and cope with dialysis?• Have you developed close relationships with other patients? Do you socialize

outside of the dialysis center? If yes, what kind of things do you do?• Life on dialysis introduces us to many challenges. At the same time, life on dialysis

introduces us to many individuals who become part of our extended family. Health care professionals who provide our care are some of these individuals. Please define those qualities and/or traits in these individuals that motivate, empower and make, or would make, your experiences with dialysis more comfortable.Nephrologist, Nurse, Dietitian,s Technician, Social Worker, Other

• Among the following, who gives you the most support and encouragement to you? Please give examples of things they do or say that you find most helpful.Nephrologist Nurse Dietitians Technician Social WorkerOther Patient Family Member Other

• Describe someone in your unit that you most admire and let us know why.• What do you like most about your dialysis unit? • What do you like least about your dialysis unit?• Additional comments



• Partner with learners to create surveys, listening opportunties

• Listen for both opportunities to build knowledge and change behaviors

• Ask about “How do YOU like to learn” • Request feedback • Keep it simple

Listening to Our Constituents What professionals & patients are saying they want from our programs...

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