Ludmila Svoboda, RN, BSN, MA, OCN Program Nurse Cancer Care Equity Program Dana-Farber Cancer Institute, Boston

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1 Ludmila Svoboda, RN, BSN, MA, OCN Program Nurse Cancer Care Equity Program Dana-Farber Cancer Institute, Boston

2 Thank you to the event organizers Thank you to The Women s Health Network a program of the MA Department of Public Health So many amazing concurrent sessions happening right now

3 Cancer Care Equity Program (brief introduction) How Dr. Lathan made this program a reality My story Ins and outs of the Cancer Care Equity Program Case studies Question and answer period

4 Telling our stories Many slides Lots of data But the most rich and important essence is in our patients lives, the details, the stories, in our and our patients humanity

5 Suzanne Berlin, DO Christopher Lathan, MD, MS, MPH Aymen Elfiky, MD, MPH Rachel Freedman, MD, MPH Audrey Kalisz, Administrative Assistant Ludmila Svoboda, RN, BSN, MA, OCN Ruth Akindele, Project Manager

6 Dana-Farber Cancer Institute BWH BMC Community clinics/health centers

7 To improve local outcomes via clinical access to preventive medicine, treatment and clinical trials at DFCI/BWH for underserved Unite disparities-related research across the institute Initiate and facilitate research in cancer disparities Aid with outreach and educational programs in the community

8 Where do patients of color, low SES and immigrants get their cancer care? Not getting treated? Presenting to the ER when it s late Community cancer centers There is lack of data

9 Other medical specialties do it such as renal medicine NCI cancer centers are engaging with community Outreach efforts are oftentimes not linked to care delivery Fact is that great disparities exist between the mortality rates Black, Latino, Asian and Caucasian patients.

10 Aim to broaden access to vulnerable patient populations Join community partners Quest for equitable care across the spectrum of cancer-related diseases

11 Efforts focus on reducing disparities in cancer outcomes to vulnerable patients locally Aim to become a national model for translating disparities research into interventions via: 1. Clinical Outreach Initiative * 2. DFCI Health Equity Reporting 3. Support for Disparities Research at DFCI

12 Oncology had a limited physical presence in underserved communities Little interaction between oncology and primary care at the diagnosis stage Waiting for the tissue diagnosis before medical oncology involvement is problematic We used the Fast Track Process to go from concept to reality

13 How our program came into existence Dr. Lathan s story Long-standing goal and passion Many years of planning and discussion with DFCI leadership A program centered around a nurse navigator 2010 Kraft donation came in to help translate this idea into reality

14 My story Background Read job advertisement Perception of lack of diversity at DFCI as through the lens of nursing community

15 Fast Track Model is a problem-solving methodology that enables teams to: Solve problems quickly Implement solutions within 90 days Improve sustainable outcomes

16 Requirements for a successful Fast Track: Clearly defined problems statement and goal Right stakeholders (closest to the problem) Enough information to develop solutions Skilled facilitation throughout process Immediate decision making by senior sponsors Solutions and implementation by stakeholders

17 DFCI, BWH, Whittier Street Health Center Social work Radiology Mammography Interpreter services Access management External affairs Nursing Medicine IT Patient navigators

18 Not the case Most patients have Mass Health Medicaid HSN Freecare accepted by DFCI/BWH Patients can easily switch from one Mass Health plan to another We do send all patient s insurance information to access management beforehand to ensure there won t be any problems, especially with a new cancer diagnosis or extensive imaging

19 Clinic at WSHC Referrals MDs rotate through clinic Patients are triaged based on need Direct referrals if time is of essence Curbside consults/questions via Communication back and forth via WSHC CPS

20 Patient Cancer Care Equity Program Follow-up Community-level educational sessions Primary Health Care Center Community Cancer Clinic Provider-level Formal & informal providerprovider consultations Didactic sessions Primary Care Provider(s) Referral for diagnostic evaluation Re-establishing connection with oncology Abnormal screening Selected non-chemo follow-up Patient-level Clinical consultations Education Follow-up Integrated Evaluation Services Support Staff Access Management Coordinator Interpreter Navigators Program Nurse Patient Navigator Oncology Provider(s) Program Nurse Oncologist DECISION POINT No Active Cancer- Related Issue Active Cancer- Related Issue Cancer Center Oncology specialists Surgeons Treatment Surveillance Supportive care Palliative Care Treatment completion Survivorship

21 New cancer diagnosis Cancer diagnosis in country of origin Cancer diagnosis/treatment in US but lost to follow-up Distant cancer diagnosis survivorship care questions Any suspicious findings

22 Abnormal scans Family history of cancer Lung cancer screening Smoking cessation Dental referrals

23 Working poor New immigrants Refugees Men and women post prison release Men and women in or after recovery Elderly Long-term immigrants

24 Spanish Somali Haitian Creole

25 MD Nurse Program Manager consent process Administrative Assistant Professional Interpreter If not available, language line (rare)

26 Program Manager Each patient is approached about consent 210 patients have consented To create a diverse patient cohort for socialbehavioral research Focus groups Rich data in our database De-identified data

27 Created an electronic patient tracking database Keep track of demographic data Where patients are referred to Date of referral appointments What type of imaging is ordered Dates of imaging Follow-up appointments Phone calls made Resolution of problem Treatment initiation

28 Electronic patient tracking database cont. Keep track of support or lack of support at home Transportation needed Language spoken and need for interpreter Any other issues identified that can be barriers to care for our patients

29 Hematology DFCI disease centers based on cancer dx Genetics Comprehensive Breast Center Plastic Surgery BWH Oral Medicine Pain Clinic High Risk Pap Clinic

30 Genetics Consultations Every three months a geneticist and genetic counselor join our team Generally a boutique service not offered for underserved communities Family pedigrees created Genetic testing obtained based on risk assessment * challenges of getting coverage from Mass Health

31 Lung Cancer Screening Grant from CVS LDCT scans Now covered by some insurance Patients had to pay out of pocket ($300+) Another boutique service now available completely free of charge to our patients Consult, scan, follow-up

32 Smoking Cessation Program Coupled with lung cancer screening For patients that don t meet lung cancer screening guidelines and wish to quit One on one in person counseling sessions with tobacco treatment specialist Assessment and communication with primary care MD/NP

33 Dental Referrals Patient are seen at WSHC s dental dept Any worrisome finding is referred to our clinic If appropriate we refer to BWH s oral medicine dept for further diagnostic studies

34 Our patients are: Poor Working two + jobs Mobile hard to keep track of Language barriers Cultural barriers Overburdened by life in general Many co-morbidities Alcohol and drug addiction

35 Post prison release on the move from halfway house to homelessness Personal health is not a priority Some patients have texting minutes but not phone minutes Phone numbers always change Hard to get in touch with patients at the end of the months out of minutes Living with family members don t get messages

36 Fantastic ideal, ideas, goals Equity, justice, decreasing barriers etc. But getting patients from point A to point B is the real challenge Of note: if patient have a new cancer diagnosis, they always show up Able to somehow mobilize community/family around them

37 Working poor seem to be hit hardest Financially secure in home country leave back home after treatment Hard for post-prison release hard to find housing and work

38 A word about our partner institution Federally Qualified Health Center Grant under PHS: goal is to improve access to care for underserved patient populations Long-standing, existing relationship with DFCI and BWH New building created opportunity for an outreach program, clinical facilities, onsite mammography suite and resource room

39 We need t thank the CEO Medical Directors Strong collaboration to make this program happen

40 Patients perceptions of DFCI: it s only for children confused with Jimmy Fund it s not for me, too expensive you experiment on people I didn t know I could go there I didn t know people would be so nice to me there

41 Referrals from trusted primary care MDs/NPs Patients are seen in familiar surroundings In their community Immediate trust Helps us build trusting relationships quickly People may have lived all their lives in Roxbury but have never crossed Tremont Street Completely different worlds, just one mile apart geographically

42 Appointment letters Phone calls in their language Flexibility with scheduling Assess patients well Help with transportation (cab vouchers, calling cab, filling out vouchers) Help with physical navigation to an appointment Staying flexible and not giving up on patients They do want to come but are overwhelmed and may be scared

43 Know your patients well Stay humble Be flexible

44 In order to prove that a program is working we need data We collect quarterly data on our patients Patient Tracking Database and New Patient Survey are merged for this collection We look at various data points in order to assess how well our program is working

45 We look at: How many patients came as new consults and follow-ups Diagnoses Where were the patients referred to Date of resolution of their presenting problem When did patient start treatment Was patient placed on clinical trial

46 Takes a great amount of people power to take care of each patient Primary care MD/NP turnover at partner facility Constantly have to reintroduce the program Some patients are lost to care after consult is placed and we never see them (not cancer patients though)

47 46 year old female with vague abdominal pain Originally from Trinidad Recently lost job in NY moved to MA to live with brother Family problems Financial insecurity Work-up completed Urology referral kidney cancer Part of kidney removed Caught early no chemotherapy needed

48 K.T. 54 year old AA male Rising PSA Multiple No-Show consults in our clinic Always called me back after hours and left messages Finally came to see us Hard past experiences with medical establishment Deep rooted distrust Rescheduled bx appointments six times Took him another six months to decide on treatment (RT vs. Surgery) Now in regular follow-up at DFCI

49 D.B. 70 year old Caucasian male In and out of prison all his life Halfway house to sober house Never had baseline colonoscopy in prison Very anemic, loosing weight Primary care MD ordered colonoscopy but patient never went Group home only has one shared bathroom Patient could not accomplish colon prep Admitted to Barbara McInnis House the day before exam so that he can do the prep in peace Ride to and from procedure as well

50 R.G. 72 year old male from DR. Diagnosed with prostate cancer Follow-up with us at WSHC Spanish speaking and illiterate We communicate via his sister Patient is our patient since 2011 but still does not understand process just shows up at WSHC, searching the halls for me

51 B.W. 58 year old AA male History of ETOH and mental illness His response to us depends on what is going on with his mental health at any given day: ok dear, I ll be at the appointment or what the #$%^%& are you talking about We fill out his cab vouchers, call the cab company, reschedule if he s having a bad day

52 56 year old AA male Released from prison Hx of substance abuse In midst of divorce Homeless, counch-surfing Renal mass surgery cancer We cannot find him Needs chemotherapy DFCI, BWH, WSHC all trying to locate him

53 A.H. 36 year old female diagnosed with aggressive breast cancer in Jordan Sent to Turkey for RT Only RT machine in Turkey was broken Mobilized and came to stay with family here, came via our clinic to DFCI and received care she needed

54 We need to meet patients in their communities in order to successfully combat disparities Access to expert care saves lives When patients get diagnosed early, their outcomes are better Big Cancer Centers need to engage with the community Disparities exist right in our backyards Working with fragile patient populations is extremely hard work Patient navigators and community health workers are the key to getting these patients to the care they need

55 Conference organizers Our team, esp Dr. Lathan, Audrey and Ruth WSHC CEO and entire team Our amazing patients and their families

56 Thank you!!