2012 Summer Medical Editors Meeting: Karen Sepucha, PhD

1. Lessons from the
Breast Cancer Initiative
Karen Sepucha, Sandra Feibelmann, Sarah Hewitt
Health Decision Sciences Center
http://www.massgeneral.org/decisionsciences/

2. Breast Cancer Suite
1. Ductal Carcinoma in situ
2. Early stage: local treatments
3. Early stage: systemic therapy
4. Breast reconstruction
5. Metastatic breast cancer

3. “The graveyard of failed products is littered
with things people should have wanted—if
only they could have been convinced that
those things were good for them”
Christensen et al Innovators’ Prescription 2009, p.16

4. Breast Cancer Initiative ’05-’12
Offer up to 10 free copies of each
program to providers
Annual follow up to track usage,
barriers, strategies

5. Dissemination process
1. Generate awareness 3. Decide to adopt 5. Sustain use
Mailed invitations to centers, Complete participant Annual mailed survey to
presentations, publications agreement form track usage, barriers and
resources
1. 2. 3. 4. 5.
272 sites 238/272 127/272 80/272 66/272
(85%) (46%) (39%) (24%)
2. Indicate interest 4. Put into practice
Request sample set and Phone survey with new
watch a program sites to determine usage

6. Program distribution to sites
6000
5000
Cumulative: ~6000
# decision aids 4000
Cumulative
3000
# programs
2000
1000
Annual: ~1000
0
1
‘05 2 3
‘07 4 5
‘09 6 ‘117 8
Year
Estimate reach ~1500 patients annually

7. What’s needed for success?
1. It’s better than the status quo
2. It’s compatible with existing organizational
values, culture, and needs
3. It’s not difficult to use
4. It’s easy to pilot and use on limited basis
5. It’s easy for user (patients and providers) to
see the impact
Rogers Diffusion of Innovations 1995

8. Who are the active sites?
• Type of practice
– Community health center (30%)
– Private/group practice (24%)
– Other (support group, non profit) (22%)
– Hospital based (16%)
– Academic center (8%)
• Main contact (95% female)
– Nurse (38%)
– Other (e.g. social worker, breast navigator) (38%)
– Doctor (24%)
• Annual patient volume median=60 (IQ 30, 270)

9. Factors associated with use
• Is this different from status quo?
– Watch a program (82% users vs. 56% non users, p=.10)
• Fit with culture?
– Have clinician support (74% users vs. 33% non users, p=.02)
• Not difficult to use? (0=not at all, 10=very difficult)
– Mean rating 4.6 (SD 3.4) users vs. 5.6 (3.6) non users, p=0.25
• Easy to pilot and use on limited basis?
– Multiple methods used (given out by doc/nurse, resource center,
support groups)
Feibelmann et al 2011

10. Easy for user to see impact?
• Providers: How helpful are programs for
patients? (0=not at all, 10=very)
– Mean rating 7.5 (2.1) users vs. 4.8 (3.3) non
users, p=0.001
• Patients:
– Overall rating: 82.5% very good or excellent
– Someone else watch with them: 48%

11. Barriers to use
Lack of reliable way to identify 37%
patients
Lack of time 22%
Too many educational materials 15%
Lack of clinician support 14%
Belief that patients do not want the 12%
DA
Concerns about literacy 10%

12. What would make it easier?
• Web-based versions (25%)
• Brochures for waiting rooms (15%)
• Training (SDM, implementation) (10%)
• Written in: “New surgeons”

13. Comments from nurses
“We find the DVD's extremely helpful…this is the information one
needs to be well informed to make an educated decision… We (the
RNs) are available to answer questions, provide any additional
information and support and guide the patient through the entire
process/continuum. Thank you!!”
- Patient care coordinator & nurse, hospital in western MA
“The DVDs are very helpful and well received by patients that view
them. However, some surgeons prefer to provide the info to
patients themselves; they like to control the information. They have
not taken the time to fully review the DVDs themselves and they do
not trust that we can provide unbiased information to their patients.
Always a work in progress!”
- Breast health navigator & nurse, hospital in OH

14. Comments from doctors
“These are extremely helpful. Relieves patient of unknown; familiarizes
patient with medical terms and their meaning. Patients ask more relevant
questions after viewing the videos. Patients make their decision easier and
faster after having viewed the videos.”
– General surgeon, private practice in southern CA
“I 100% love using the Recon DVD with my patients… it provides an
excellent overview. Patients come with informed ideas - some of which
match perfectly with their clinical scenarios. But even when a patient is not a
good candidate for what she believes is her #1 choice prior to the visit, we
are able to work together easier to mutually develop a treatment plan.”
– Plastic surgeon, private practice in northern NJ
Chemotherapy & hormone therapy one is a bit too generalized. Those are
two really different topics & perhaps should be separated out.
-- Medical oncologist, academic hospital NH

15. Summary
• Many providers are interested (not just
academic centers)
• About 1/4 implement with little to no help
• Many have difficulties getting to all eligible
patients
• Lots of “Thank Yous”!