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Survivo rship 7/ 9/ 15 Collecting Cancer Data: Survivorship Care Plans 2014-2015 NAACCR We b ina r Se rie s July 9, 2015 Q&A Ple a se sub mit a ll q ue stio ns c o nc e rning we b ina r c o nte nt thro ug h the Q&A pa ne l. Re


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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 1

Collecting Cancer Data: Survivorship Care Plans

2014-2015 NAACCR We b ina r Se rie s July 9, 2015

Q&A

  • Ple a se sub mit a ll q ue stio ns c o nc e rning we b ina r

c o nte nt thro ug h the Q&A pa ne l. Re minde r:

  • I

f yo u ha ve pa rtic ipa nts wa tc hing this we b ina r a t yo ur site , ple a se c o lle c t the ir na me s a nd e ma ils.

  • We will b e distrib uting a Q&A do c ume nt in a b o ut o ne we e k.

T his do c ume nt will fully a nswe r q ue stio ns a ske d during the we b ina r a nd will c o nta in a ny c o rre c tio ns tha t we ma y disc o ve r a fte r the we b ina r.

2

F ABUL OUS PRIZE S

3

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 2

SPE AKE RS

  • A. Blythe Rye rso n, PhD, MPH
  • L

e a d E pide mio lo g ist a t the Ca nc e r Surve illa nc e Bra nc h, Divisio n o f Ca nc e r Pre ve ntio n & Co ntro l, Ce nte rs fo r Dise a se Co ntro l a nd Pre ve ntio n

  • L

isa L a ndvo g t, BA, CT R

  • Ac c re dita tio n Se rvic e s Dire c to r Re g istry Pa rtne rs Inc
  • Ca thy Ble dso e , MPH & Ra ndi Ryc ro ft, MSPH
  • Co lo ra do Ca nc e r Re g istry

4

NAACCR Cancer Registry and Surveillance Webinar Series Survivorship Care Plans July 9, 2015

  • A. Blythe Ryerson, PhD, MPH

Lead Epidemiologist Cancer Surveillance Branch, Division of Cancer Prevention & Control, Centers for Disease Control and Prevention

Introduction Linking Cancer Registries and the Needs of Survivors and Clinicians

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 3

Presentation Outline

  • Survivorship IS public health
  • National Program of Cancer Registries (NPCR)
  • NPCR in survivorship practice & research
  • Study recruitment
  • Patient‐centered outcomes research
  • Treatment summaries and care plans
  • A vision for cancer registries: impacting quality care
  • Quality assessment and improvement
  • Patient‐reported outcomes

SURVIVORSHIP IS PUBLIC HEALTH

Cancer Survivorship

  • Cancer survivors in U.S. now exceed 13.4 million
  • More people are living with cancer due to:
  • An aging population
  • Earlier diagnosis
  • Better treatment

http://www.cdc.gov/cancer/survivorship

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 4

Issues Faced by Cancer Survivors

Medical Physical Psychological Cognitive Social Practical Economic

Recurrence, late effects Pain, fatigue, infertility Anxiety, depression, resilience, awareness Memory, learning, attention Relationships, communication, care giving Access to care, understanding follow-up Financial burden, lost income, insurance

Public Health Prevention

THE NATURAL HISTORY OF ANY DISEASE OF MAN

Interrelations of Agent, Host, and Environmental Factors Reaction of the HOST to the STIMULUS Production of STIMULUS Early pathogenesis Discemible Early Lesions Advanced Disease Convalescence Prepathogenesis period Period of Pathogenesis HEALTH PROMOTION SPECIFIC PROTECTION EARLY DIAGNOSIS and PROMPT TREATMENT DISABILITY LIMITATION REHABILITATION Health education Good standard of nutrition adjusted to developmental phases

  • f life

Attention to personality development Provision of adequate housing, recreation and agreeable working conditions Marriage counseling and sex education Genetics Periodic selective examinations Use of specific immunizations Attention to personal hygiene Use of environmental sanitation Protection against occupational hazards Protection from accidents Use of specific nutrients Protection from accidents Use of specific nutrients Protection from carcinogens Avoidance of allergens Case-finding measures, individual and mass Screening surveys Selective examinations Objectives: To cure and prevent disease processes To prevent the spread of communicable diseases To prevent complications and sequelae To shorten period of disability Adequate treatment to arrest the disease process and to prevent further complications and sequelae Provision of facilities to limit disability and to prevent death Provision of hospital and community facilities for retraining and education for maximum use of remaining capacities Education of the public and industry to utilize the rehabilitated As full employment as possible Selective placement Work therapy in hospitals Use of sheltered colony Primary Prevention Secondary Prevention Tertiary Prevention Baumann LC, Karel A. Prevention: Primary, Secondary, Tertiary. Encyclopedia of Behavioral Medicine. Springer Science+Business Media, New York 2013

Cancer Survivorship Cancer Survivorship

Public Health Prevention

THE NATURAL HISTORY OF ANY DISEASE OF MAN

Interrelations of Agent, Host, and Environmental Factors Reaction of the HOST to the STIMULUS Production of STIMULUS Early pathogenesis Discemible Early Lesions Advanced Disease Convalescence Prepathogenesis period Period of Pathogenesis HEALTH PROMOTION SPECIFIC PROTECTION EARLY DIAGNOSIS and PROMPT TREATMENT DISABILITY LIMITATION REHABILITATION Health education Good standard of nutrition adjusted to developmental phases

  • f life

Attention to personality development Provision of adequate housing, recreation and agreeable working conditions Marriage counseling and sex education Genetics Periodic selective examinations Use of specific immunizations Attention to personal hygiene Use of environmental sanitation Protection against occupational hazards Protection from accidents Use of specific nutrients Protection from accidents Use of specific nutrients Protection from carcinogens Avoidance of allergens Case-finding measures, individual and mass Screening surveys Selective examinations Objectives: To cure and prevent disease processes To prevent the spread of communicable diseases To prevent complications and sequelae To shorten period of disability Adequate treatment to arrest the disease process and to prevent further complications and sequelae Provision of facilities to limit disability and to prevent death Provision of hospital and community facilities for retraining and education for maximum use of remaining capacities Education of the public and industry to utilize the rehabilitated As full employment as possible Selective placement Work therapy in hospitals Use of sheltered colony Primary Prevention Secondary Prevention Tertiary Prevention Baumann LC, Karel A. Prevention: Primary, Secondary, Tertiary. Encyclopedia of Behavioral Medicine. Springer Science+Business Media, New York 2013

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 5

Public Health and Cancer Survivorship

  • A National Action Plan for Cancer Survivorship: Advancing Public

Health Strategies

  • LIVESTRONG & CDC: April, 2004

http://www.cdc.gov/cancer/survivorship/pdf/plan.pdf

  • From Cancer Patient to Cancer Survivor: Lost in Transition
  • IOM: November, 2005

http://www.iom.edu/Reports/2005/From‐Cancer‐Patient‐to‐Cancer‐Survivor‐Lost‐in‐Transition.aspx

  • Cancer Care for the Whole Patient
  • IOM: October, 2007

http://www.iom.edu/Reports/2007/Cancer‐Care‐for‐the‐Whole‐Patient‐Meeting‐Psychosocial‐Health‐Needs.aspx

  • Living Well with Chronic Illness
  • IOM: January, 2012

http://www.iom.edu/Reports/2012/Living‐Well‐with‐Chronic‐Illness.aspx

CDC and Cancer Survivorship

  • Identify the needs of survivors
  • Raise awareness of issues around survivorship
  • Support research and programmatic efforts to

meet the needs of survivors

NATIONAL PROGRAM OF CANCER REGISTRIES (NPCR)

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 6

National Program of Cancer Registries

  • CDC funds NPCR registries covering 96%
  • f the U.S. population
  • Established in 1992 through the Cancer

Registries Amendment Act

  • Develops and supports Registry PlusTM
  • Works collaboratively with many federal and non‐federal partners: National

Cancer Institute (SEER), NAACCR, ACS, etc.

Data Dissemination

NPCR & SEER

SEER Research Data

United States Cancer Statistics

NPCR + SEER Analytic Data CINA Data

State Cancer Profiles

NPCR IN SURVIVORSHIP PRACTICE & RESEARCH

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 7

Study Recruitment

  • Registries provide population‐based lists of ALL patients diagnosed with cancer,

regardless of

  • Socio‐economic states
  • Locality
  • Quality of clinical care
  • Can be used to evaluate effectiveness of interventions
  • Treatments
  • Behavior change

Study Recruitment

Early Case Capture Project

  • Complexity of cancer reporting creates delays in collection, consolidation,

dissemination, and use

  • NPCR Early Case Capture for pediatric cases project
  • Carolyn Pryce Walker Act (2008)
  • Seven NPCR programs collecting pediatric cases within 30 days of diagnosis
  • Faster data=high potential for clinical trial enrollment

Study Recruitment

Behavioral Interventions

  • Study recruitment through registries is a common practice for some registries, but

not all

  • CDC initiatives to understand barriers, and facilitators, including those at the

federal level

  • Improving cancer screening among breast and CRC survivors and their relatives
  • Promote proactive tobacco cessation among cancer survivors
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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 8

Patient‐Centered Outcomes Research

  • Comparing relative health outcomes, clinical effectiveness, and appropriateness of

different medical treatment

  • Cancer Registries = Population‐based = “Real world”
  • CDC initiatives to using NPCR data for this type of research:
  • 2010: Establishment of NPCR Specialized Registries and baseline data collection on a 2011 PCOR

cohort

  • 2013: measurement of intermediate outcomes for PCOR cohort

Patient‐Centered Outcomes Research

NPCR Specialized Registries

  • Collection of enhanced data for people

diagnosed in 2011 with cancers of the

  • Breast,
  • Colon,
  • Rectum,
  • Chronic myeloid leukemia
  • NPCR received funds from the American Recovery and Reinvestment Act or 2009
  • Enables examination of critical issues in cancer care

Patient‐Centered Outcomes Research

Collection of Intermediate Outcomes

  • In 2013, CDC received additional support through the Patient Centered Outcomes

Research Trust Fund

  • 5 of the 10 NPCR Specialized Registries collecting intermediate outcomes on the

2011 cohort:

  • Progression
  • Recurrence
  • Subsequent therapy
  • Vital Status
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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 9

Treatment Summaries and Care Plans

  • In 2010, CDC funded the Colorado Central Cancer Registry to develop a secure,

web‐based application for pre‐populating and semi‐automating care plans using registry data

  • CDC continues working with Colorado to integrate the tool into Web Plus

A VISION FOR CANCER REGISTRIES: IMPACTING QUALITY CARE

Challenged, Yet Uniquely Capable

  • Barriers to overcome:
  • Maintaining patient protects and confidentiality
  • Existing legal and regulatory requirements
  • Type of data routinely recorded in the health record
  • Resources
  • By overcoming these barriers (or despite them), cancer registries have

tremendous potential to impact survivorship care and research

  • Applying registry data for quality assessment and improvement
  • Linking registry data with patient‐reported outcomes
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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 10

Quality Assessment and Improvement

  • Practice‐specific measures, evaluation, and feedback
  • Learning Healthcare System(s)
  • Guide quality improvement initiatives

Patient‐Reported Outcomes (PROs)

  • Clinical data linked with the patient perspective are more powerful
  • PROs are reports directly from the patient
  • Symptoms
  • Functioning
  • Treatment satisfaction
  • Health‐related quality of life
  • Many others
  • More fluid data exchange between cancer registries and patients, clinicians, and

healthcare facilities would allow for better health communication and outcomes

Conclusion

  • Cancer surveillance data remain the core of cancer epidemiology and outcomes in

clinical cancer research

  • Registries are the most sophisticated and standardized surveillance system in the

U.S.

  • Registries are uniquely poised to serve as a source of critical data for cancer

survivors, clinicians, and researchers

  • NPCR will continue to expand the usefulness of registry data to cancer survivors,

providers, and researchers

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 11

For more information please contact Centers for Disease Control and Prevention 1600 Clifton Road NE, Atlanta, GA 30333 Telephone: 1‐800‐CDC‐INFO (232‐4636)/TTY: 1‐888‐232‐6348 Visit: www.cdc.gov | Contact CDC at: 1‐800‐CDC‐INFO or www.cdc.gov/info

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. National Center for Chronic Disease Prevention and Health Promotion Division of Cancer Prevention and Control

Blythe Ryerson, MPH, PhD

ARyerson@cdc.gov 770‐488‐2426

Contact Information

Survivo rship Ca re Pla n: Sta nda rd 3.3

L I SA L ANDVOGT , BA, CT R ACCREDI T AT I ON SE RVI CE S DI RE CT OR, RE GI ST RY PART NE RS I NCORPORAT E D

Survivo rship Ca re Pla n

 L

e t’ s sta rt with the o b vio us…WHO is a c a nc e r survivo r?

 F

ro m the I nstitute o f Me dic ine (I OM) Re po rt

“a n individua l is c o nside re d a c a nc e r survivo r fro m

the time o f c a nc e r dia g no sis thro ug h the b a la nc e

  • f his o r he r life , a c c o rding to the Na tio na l

Co a litio n fo r Ca nc e r Survivo rship a nd the NCI Offic e o f Ca nc e r Survivo rship.”

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 12

Survivo rship Ca re Pla n Survivo rship Ca re Pla n

 T

he c a nc e r c o mmitte e de ve lo ps a nd imple me nts a pro c e ss to disse mina te a c o mpre he nsive c a re summa ry a nd fo llo w-up pla n to pa tie nts with c a nc e r who a re c o mple ting c a nc e r tre a tme nt. T he pro c e ss is mo nito re d, e va lua te d, a nd pre se nte d a t le a st a nnua lly to the c a nc e r c o mmitte e a nd do c ume nte d in minute s

Survivo rship Ca re Pla n

 L

e t’ s b re a k this pa ra g ra ph do wn:

 Ca nc e r c o mmitte e de ve lo ps a pro c e ss to

disse mina te the fo llo wing

 Co mpre he nsive c a re summa ry  F

  • llo w-up pla n to pa tie nts with c a nc e r who a re c o mple ting

c a nc e r tre a tme nt

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 13

Survivo rship Ca re Pla n

 L

e t’ s b re a k this pa ra g ra ph do wn (c o ntinue d ):

 T

he pro c e ss is mo nito re d a nnua lly a nd do c ume nte d in the minute s

 T

he pro c e ss is e va lua te d a nnua lly a nd do c ume nte d in the minute s

 T

he pro c e ss is pre se nte d a nnua lly a nd do c ume nte d in the minute s

Survivo rship Ca re Pla n

 Missing a ste p in the writte n re q uire me nt c a n

c re a te a n unne c e ssa ry de fic ie nc y e ve n if the pro c e ss is in pla c e a nd func tio ning

 “if it’ s no t in the minute s…it ne ve r ha ppe ne d”

Survivo rship Ca re Pla n

 Is NOTthe re spo nsib ility o f the Ca nc e r Re g istra r Re pe a t a fte r me …Survivo rship Ca re Pla ns a re NOT the re spo nsib ility o f the Ca nc e r Re g istra r

 T

he Ca nc e r Re g istra r DOES NOT

c re a te a pro c e ss fo r

Survivo rship Ca re Pla ns

 T

he Ca nc e r Re g istra r DOES NOT

mo nito r o r e va lua te

the pro c e ss o f Survivo rship Ca re Pla ns

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 14

Survivo rship Ca re Pla n

 If no t YOU, the n WHO?

 Me dic a l Onc o lo g ist  Ra dia tio n Onc o lo g ist  Onc o lo g y Nurse  Nurse Pra c titio ne r  Onc o lo g y So c ia l Wo rke r  All o f the a b o ve

Survivo rship Ca re Pla n

 T

he “Jo urne y F

  • rwa rd” fo r Survivo rship Ca re

Pla ns

 1940’ s – 1950’ s Ca nc e rCa re e sta b lishe d in 1944 (na tio na l no npro fit

  • rg a niza tio n pro viding fre e pro fe ssio na l suppo rt

se rvic e s to a nyo ne a ffe c te d b y c a nc e r)

Ame ric a n Ca nc e r So c ie ty (ACS) e sta b lishe d in 1946,

the o lde st vo lunta ry he a lth a g e nc y de dic a te d to c o nq ue ring c a nc e r thro ug h re se a rc h, e duc a tio n, a dvo c a c y, a nd se rvic e

Survivo rship Ca re Pla n

 T

he “Jo urne y F

  • rwa rd” fo r Survivo rship Ca re Pla n

 1980’ s – 1990’ s

 T

he We llne ss Co mmunity e sta b lishe d in 1982

 Na tio na l Co a litio n fo r Ca nc e r Survivo rship e sta b lishe d 1986  ACS, first Survivo r Bill o f Rig hts, 1988  Na tio na l Bre a st Ca nc e r Co a litio n e sta b lishe d in 1990  Ca nc e r L

e a de rship Co unc il e sta b lishe d in 1993

 Offic e o f Ca nc e r Survivo rship e sta b lishe d in 1996  L

a nc e Armstro ng F

  • unda tio n (L

AF ) e sta b lishe d 1997

 Na tio na l Ca nc e r Po lic y Bo a rd b e g ins o pe ra tio n unde r the

Institute o f Me dic ine (IOM), 1997

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 15

Survivo rship Ca re Pla n

 T

he “Jo urne y F

  • rwa rd” fo r Survivo rship Ca re Pla n

 2000 – Pre se nt

 L

AF L ive stro ng Survivo rship Ce nte rs o f E xc e lle nc e Ne two rk, 2000

 Pre side nt’ s Co unc il Pa ne l a nnua l re po rt L

iving Be yo nd Ca nc e r: F inding a Ne w Ba la nc e , 2003/ 2004

 ASCO Survivo rship T

a sk F

  • rc e F
  • rme d, 2004

 NCI, Ca nc e r Survivo rship: I

mpro ving T re a tme nt Outc o me s a nd Qua lity o f L ife , 2004

 IOM re po rt to impro ve survivo rship c a re , F

ro m Ca nc e r Pa tie nt to Ca nc e r Survivo r: L

  • st in T

ra nsitio n, 2006

 Co mmissio n o n Ca nc e r, Pa tie nt Ca re Sta nda rds, 3.3 Re q uire me nt

  • f Survivo rship Ca re Pla ns fo r a c c re dite d c a nc e r pro g ra ms, 2012

Survivo rship Ca re Pla n

 Wha t wa s in the I

nstitute o f Me dic ine (I OM) Re po rt?

 E

sta b lish survivo rship a s a distinc t pha se o f c a re

 I

mple me nt survivo rship c a re pla ns

 Build b ridg e s b e twe e n o nc o lo g y a nd prima ry c a re  De ve lo p a nd te st mo de ls o f c a re  De ve lo p a nd e va lua te c linic a l pra c tic e g uide line s  Institute q ua lity o f survivo rship me a sure s  Stre ng the n pro fe ssio na l e duc a tio n  E

xpa nd use o f psyc ho so c ia l a nd c o mmunity suppo rt se rvic e s

 Inve st in survivo rship re se a rc h

Survivo rship Ca re Pla n

 Who is Sta nda rd 3.3 inte nde d to inc lude ?

 F

  • c use d o n a sub se t o f survivo rs who a re tre a te d with

c ura tive inte nt

 Ha ve c o mple te d a c tive the ra py (o the r tha n lo ng

te rm ho rmo na l the ra py)

 I

nc lude s pa tie nts fro m a ll dise a se site s

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 16

Survivo rship Ca re Pla n

 E

xc e ptio ns to Sta nda rd 3.3

 Pa tie nts with me ta sta tic dise a se , tho ug h survivo rs

b y so me de finitio ns, a re no t ta rg e te d fo r de live ry

  • f c o mpre he nsive c a re summa rie s a nd fo llo w-up

pla ns

Survivo rship Ca re Pla n

 Co re Da ta E

le me nts, a s re c o mme nde d b y Ame ric a n So c ie ty o f Clinic a l Onc o lo g y (ASCO)

 T

re a tme nt Summa ry

 F

  • llo w-up Ca re Pla n

Survivo rship Ca re Pla n

 T

re a tme nt Summa ry

 Co nta c t info rma tio n o f tre a ting institutio ns a nd pro vide rs  Spe c ific dia g no sis: c a nc e r type , c e ll type , sta g e , da te a nd

pa tie nt a g e a t dia g no sis

 T

re a tme nt de ta ils

 Surg ic a l pro c e dure (s): b o dy lo c a tio n a nd da te (s)  Che mo the ra py: a g e nt(s) a dministe re d a nd da te e nde d  Ra dia tio n: spe c ific type , a na to mic a l a re a tre a te d, do sa g e a nd

da te s

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Survivo rship Ca re Pla n

 T

re a tme nt Summa ry

 Co mplic a tio ns/ Side e ffe c ts  Ong o ing to xic ity

 On/ Off tre a tme nt  L

  • ng te rm c o mplic a tio ns

 Ge ne tic s fo r se le c t c a nc e rs

 On/ Off tre a tme nt  L

  • ng te rm c o mplic a tio ns

Survivo rship Ca re Pla ns

 F

  • llo w-Up Ca re Pla n

 Ne e d fo r o ng o ing a djuva nt the ra py fo r c a nc e r  Sc he dule o f fo llo w up re la te d c linic a l visits  Ca nc e r surve illa nc e te sts fo r re c urre nc e  Ca nc e r sc re e ning fo r e a rly de te c tio n o f ne w prima rie s  Othe r pe rio dic te sting a nd e xa mina tio ns  Sympto ms o f re c urre nc e  L

ist o f lo ng te rm e ffe c ts

 L

ist o f e mo tio na l o r me nta l he a lth, fina nc ia l, e mplo yme nt, fa mily issue s

 Impo rta nc e o f he a lthy life style

Survivo rship Ca re Pla n

 F ive Ste p Pla n De ve lopme nt

Obje c tive Indic a tor 1 De ve lo p a nd utilize a c o mmo n d e finitio n o f survivo rship, pa tie nt na vig a tio n, c o mmunity he a lth wo rke r ro le s, pa llia tive c a re Numbe r o f pa rtne rs a do pting the de finitio ns 2 Co mple te a c o mmunity ne e d s a sse ssme nt o r re -a sse ssme nt fo r survivo rship se rvic e s Co mple te d a sse ssme nt o r re -a sse ssme nt 3 E d uc a te c o mmunity he a lth wo rke rs o n the mo st impo rta nt c a nc e r info rma tio n Numbe r o f c o mmunity he a lth wo rke rs tra ine d 4 De ve lo p a stro ng survivo rship re so urc e s ne two rk De ve lo p a nd pro mo te o nline c le a ring ho use s o f survivo rship info rma tio n a nd re so urc e s a nd a d d re ss g a ps in se rvic e s 5 De ve lo p a nd inc re a se use o f tre a tme nt summa rie s a nd c a re pla ns Me a sure c o unts/ pe rc e nt o f me d ic a l pro vid e rs. Inc re a se d use o f fo llo w up c a re , pa tie nt se lf-re po rting , de c re a se the re c idivism ra te s

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Survivo rship Ca re Pla n

 Co C Spe c ific Re q uire me nts

 A survivo rship c a re pla n is pre pa re d b y the princ iple pro vide rs who

c o o rdina te o nc o lo g y tre a tme nt fo r the pa tie nt with input fro m the pa tie nt’ s o the r c a re pro vide rs

 T

he survivo rship c a re pla n is g ive n to the pa tie nt a t the c o mple tio n o f tre a tme nt

 T

he writte n o r e le c tro nic survivo rship c a re pla n c o nta ins:

 A re c o rd o f c a re re c e ive d  I

mpo rta nt dise a se c ha ra c te ristic s

 F

  • llo w-up c a re pla n inc o rpo ra ting a va ila b le a nd re c o g nize d

e vide nc e d b a se d sta nda rds o f c a re , whe n a va ila b le

Survivo rship Ca re Pla n

 Co C Spe c ific Do c ume nta tio n

 Co mple te the Surve y Applic a tio n Re c o rd (SAR)  During the o n-site visit the surve yo r will disc uss with the

c a nc e r c o mmitte e the me tho ds imple me nte d to c re a te a nd disse mina te a survivo rship c a re pla n

Survivo rship Ca re Pla n

 Co C E

sta b lishe d Co mplia nc e T ime F ra me

 By 1/ 1/ 15 – Pilo t survivo rship c a re pla n pro c e ss imple me nte d

invo lving 10% o f e lig ib le pa tie nts

 By 1/ 1/ 16 - Pro vide survivo rship c a re pla ns to 25%

  • f e lig ib le pa tie nts

 By 1/ 1/ 17 – Pro vide survivo rship c a re pla ns to 50%

  • f e lig ib le pa tie nts

 By 1/ 1/ 18 – Pro vide survivo rship c a re pla ns to 75%

  • f e lig ib le pa tie nts

 By 1/ 1/ 19 – Pro vide survivo rship c a re pla ns to AL Le lig ib le pa tie nts

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 19

Survivo rship Ca re Pla n

 Co C Sta nda rd Ra ting Optio ns

 (1) Co mplia nc e

 Ca nc e r c o mmitte e ha s de ve lo pe d a pro c e ss to disse mina te a

c o mpre he nsive c a re summa ry a nd fo llo w-up pla n to pa tie nts with c a nc e r who a re c o mple ting c a nc e r tre a tme nt

 E

a c h ye a r, the pro c e ss is imple me nte d, mo nito re d, e va lua te d a nd pre se nte d to the c a nc e r c o mmitte e

 (5) No nc o mplia nc e

 T

he c a nc e r c o mmitte e do e s no t fulfill o ne o r b o th o f the a b o ve me ntio ne d c o mplia nc e re q uire me nts

Survivo rship Ca re Pla n

 Surve y Applic a tio n Re c o rd (SAR)  Pro g ra m Ac tivity Re c o rd (PAR)  K

e e p upda te d o n a t le a st a n a nnua l b a sis

Survivo rship Ca re Pla n

Que stio ns? L isa L a ndvo g t, BA, CT R Ac c re dita tio n Se rvic e s Dire c to r lisa la ndvo g t@ re g istrypa rtne rs.c o m 336-639-1703

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 20

Survivo rship Ca re Pla n

Quiz Survivorship Care Planning

Using Technology to Help Provide Patient-Centered Care

Cathy Bledsoe, MPH & Randi Rycroft, MS PH

Agenda

  • Background on S

urvivorship Care Plans (S CPs)

  • S

CP options available

  • S

CP Technology-enhanced solutions

  • Example: WebPlus S

urvivorship Program

  • Q&A/ Quiz
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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 21

Learning Obj ectives

  • Learn about the role that a treatment summary and

survivorship care plan plays in cancer survivorship.

  • Learn about the different options for TS

/ S CP templates.

  • Learn about one strategy for meeting S

tandard 3.3 of the 2012 American College of S urgeons Program S tandards which involves collaboration between cancer registries and oncology providers.

Background

Treatment S ummary= A concise summary of diagnosis, treatment and related health factors. S urvivorship Care Plan= A guide for patients and PCPs to follow which summaries future care needs (follow-up, contact information, health and lifestyle recommendations, etc.)

Background

  • Treatment S

ummaries and S urvivorship Care Plans (TS / S CPs) are meant to help patients bridge the gap between oncology and primary care

  • They are also meant to help empower patients to

understand their diagnosis and future care needs and to help them locate resources.

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 22

Background

  • This is not a new idea!
  • 1996- National Coalition for Cancer S

urvivors

  • 2004- President’ s Cancer Panel, Action Plan on S

urvivorship (CDC and LAF)

  • 2005- Institute of Medicine report: Lost in Transit ion
  • Despite the calls from nationally recognized
  • rganizations, implementation was slow.
  • 2012 Commission on Cancer Program S

tandards

Templates: Things to Consider

  • A good template should…
  • Be fast and easy to fill out
  • Provide the right amount of information to patients

and their primary care providers

  • Multiple Options available
  • “ Homegrown” templates/ mixtures of multiple resources

Templates: Things to Consider

  • Registry data
  • EHR data
  • Patient reported outcomes
  • S

ite-specific templates

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 23

Review of Templates

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? Notes on technology integration:

American S

  • ciety of Clinical Oncology (AS

CO) American S

  • ciety of Clinical Oncology (AS

CO)

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? Yes In progress Free Yes Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? No Maybe Save files to local drive No Notes on technology integration: Working on HL7 integration, with a goal of pre-populating from EMRs

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 24

Livestrong/ Oncolink Livestrong/ Oncolink

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? SCP only Unknown Free Yes Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? Maybe Maybe Web-based, no PHI, no saving Yes Notes on technology integration: Unknown

Journey Forward

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 25

Journey Forward

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? Yes Yes Free Yes Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? Yes Yes Local storage No Notes on technology integration:

Working with several cancer registry soft ware systems, EMRs, and mobile apps (“ My Care Plan” )

On Q Health On Q Health

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? Yes EMR, registry Yes, differs by size

  • f system

Yes Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? Yes Yes Secure cloud server Planned for future Notes on technology integration: Working with METRIQ, piloting with Epic and CERNER, among others

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 26

Passport for Care (Pediatric) Passport for Care (Pediatric)

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? Yes No

Free for COG members & clinics

Yes Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? Yes Yes PHI encrypted at clinic level Some, more in progress Notes on technology integration: Survivor portal launches April 15!

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 27

The Web Plus Survivorship Tool:

A case study of technology in action

Web Plus S urvivorship Tool: Background

  • Received funding in 2010 from CDC/ National Program of

Cancer Registries for “ innovative uses of cancer registry data”

  • Purpose: Develop a way to pre-populate S

CPs with data from the registry and demonstrate that it is feasible in

  • ncology practices

Web Plus S urvivorship Tool

Website demonstration

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 28

Web Plus S urvivorship Tool

Common Criteria for Survivorship Care Plans

Meets CoC standards? Able to import data? Cost? User friendly? Yes Yes- Any Cancer Registry Free for NPCR- funded states Yes Patient-friendly report? Provider friendly report? S ecurity? Available in S panish? Yes Yes Web based, secure server Yes Notes on technology integration:

Uses standard cancer registry file for integration, will work with any registry software

Web Plus S urvivorship Tool: Background

  • Ran a small pilot in the summer of 2012
  • Interviewed patients and providers on their experience

with the tool and templates

  • Also conducted before/ after document reviews

Web Plus S urvivorship Tool: Pilot Results

Nurses:

  • Ease of Use- 8.8/ 10
  • Usefulness- 8.0/ 10
  • Acceptability- 9.9/ 10

Most changes suggested for templates, not web app Provider Profile idea

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 29

Web Plus S urvivorship Tool: Pilot Results

Patients:

  • Information not new, but helpful
  • Timing and a written record important
  • 100%

would recommend “It made it all so clear. It made it understandable. It’s easy to believe after reading through it all that the cancer is controllable.”

Next S teps for this proj ect

  • Module is currently being incorporated into the CDC’ s

Web Plus software product.

  • Colorado and Idaho will be completing final testing,

creating training videos for providers, and developing an implementation guide for states.

  • The product should be available to states later this year.

Next S teps for the Field of S urvivorship Care Planning

  • Most products are moving toward Cancer Registry or EHR

integration

  • S
  • me are also moving toward patient engagement

through PROs and patient portals

  • Research needed more than ever!
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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 30

Learning Obj ectives

  • Learn about the role that a treatment summary and

survivorship care plan plays in cancer survivorship.

  • Learn about the different options for TS

/ S CP templates.

  • Learn about one strategy for meeting S

tandard 3.3 of the 2012 American College of S urgeons Program S tandards which involves collaboration between cancer registries and oncology providers.

References

National Research Council. (2005). From Cancer Pat ient t o Cancer S urvivor: Lost in Transit ion. Washington, DC: The National Academies Press.

  • Video

American College of S urgeons Commission on Cancer. (2011). Cancer Program S t andards 2012: Ensuring Pat ient - Cent ered Care (version 1.2.1). Chicago, IL. American S

  • ciety of Clinical Oncology. AS

CO Cancer Treat ment S ummaries and S urvivorship Care Plans. Retrieved from http:/ / www.cancer.net/ survivorship/ follow-care-after-cancer-t reat ment/ asco-cancer-t reatment- summaries-and-survivorship-care-plans Colorado Department of Public Health and Environment. Colorado S urvivorship Care Planning Program. Retrieved from https:/ / www.colorado.gov/ pacific/ cdphe/ survivorship Journey Forward. S urvivorship Care Plan Builder. Retrieved from http:/ / www.j ourneyforward.org/ professionals/ survivorship-care-plan-builder LIVES

  • TRONG. Livest rong Care Plan. Retrieved from http:/ / www.livestrongcareplan.org/

On Q Health. On Q Healt h Care Planning S yst em (CPS ). Retrieved from http:/ / onqhealth.com/ onqhealth-care- planning-syst em/ Texas Children’ s Cancer and Hematology Centers. Passport for Care Applicat ion. Retrieved from

Questions?

Contact: Cathy.Bledsoe@ st ate.co.us (303) 691-4047 Randi.Rycroft@ stat e.co.us

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 31

Quiz

1) How many cancer survivors will there be in the U.S . by 2020? 2) When should a treatment summary/ survivorship care plan be given? 3) How much of the TS / S CP can be pre-populated with cancer registry data? 4) What can and cannot be the role of the cancer registrar?

COMING UP…

  • Co lle c ting Ca nc e r Da ta : Ce ntra l Ne rvo us

Syste m

  • 8/ 6/ 15
  • Co ding Pitfa lls
  • 9/ 3/ 15

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AND T HE WINNE RS ARE … ..

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Survivo rship 7/ 9/ 15 NAACCR 2014-2015 We b ina r Se rie s 32

CE CE RT IF ICAT E QUIZ/ SURVE Y

  • Phra se
  • L

ink

  • http:/ / www.surve yg izmo .c o m/ s3/ 2224318/ Survivo rship

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