Carr, D. et al.: Using Technology to Engage Patients and Clinicians in Electronic Cancer Symptom Assessment and Management: Lessons Learned and Implications for Practice This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com ) Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team

Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com )

Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

Using Technology to Engage Patients and Clinicians in Electronic Cancer Symptom Assessment and Management Lessons Learned and Implications for Practice Medicine 2.0 Conference Dafna Carr, Director, eHealth Strategy and Partnerships Steve Hall, Chief Technology Officer S eptember 5, 2008

The starting point : creating system-wide change for palliative care cancer patients Minimal use of assessment tools Lack of evidence-based practice Inconsistent symptom management practices Discontinuity of care at points of transfer Lack of service coordination Lack of communication between health care providers Under-utilization of available resources Unmet patient and family needs Discomfort of physicians in managing palliative-related symptoms CCO is focused on improving the patient journey Key care delivery problems in the area of palliative/end-of-life care:

Minimal use of assessment tools

Lack of evidence-based practice

Inconsistent symptom management practices

Discontinuity of care at points of transfer

Lack of service coordination

Lack of communication between health care providers

Under-utilization of available resources

Unmet patient and family needs

Discomfort of physicians in managing palliative-related symptoms

Key care delivery problems in the area of palliative/end-of-life care:

Funded and executed project with the following objectives: Increase documentation of symptom intensity and shorten time to symptom control Enhance education and facilitate and improve dissemination and uptake of evidence-based practices Improve communication and liaison between health care professionals and across sectors Enhance service coordination Improve outcomes: Increase patient satisfaction due to empowerment, decreased symptom intensity, improved care access and delivery Target population: lung cancer patients Introduce Regional Improvement Coordinators Measure outcomes Making a difference: Cancer Care Ontario and MOHLTC partner

Funded and executed project with the following objectives:

Increase documentation of symptom intensity and shorten time to symptom control

Enhance education and facilitate and improve dissemination and uptake of evidence-based practices

Improve communication and liaison between health care professionals and across sectors

Enhance service coordination

Improve outcomes: Increase patient satisfaction due to empowerment, decreased symptom intensity, improved care access and delivery

Target population: lung cancer patients

Introduce Regional Improvement Coordinators

Measure outcomes

Implemented Evidence-based screening, assessment and care management tools: Edmonton Symptom Assessment System Palliative Performance Scale (PPS) Symptom Management Guidelines Collaborative Care Plans Electronic Assessment Making a difference: Cancer Care Ontario and MOHLTC partner cont’d.

Implemented Evidence-based screening, assessment and care management tools:

Edmonton Symptom Assessment System

Palliative Performance Scale (PPS)

Symptom Management Guidelines

Collaborative Care Plans

Electronic Assessment

Interactive Symptom Assessment and Collection tool – ISAAC was developed by CCO An easy to use electronic tool that puts cancer patients in control of their own symptoms Patients are asked to rate the severity of nine common cancer symptoms using the Edmonton Symptom Assessment System (ESAS) ISAAC allows patients to track their own symptoms over time and notifies the appropriate clinicians when the scores exceed certain parameters ISAAC is web-based, patients can access where Internet connection is available Using technology: developing the electronic assessment

An easy to use electronic tool that puts cancer patients in control of their own symptoms

Patients are asked to rate the severity of nine common cancer symptoms using the Edmonton Symptom Assessment System (ESAS)

ISAAC allows patients to track their own symptoms over time and notifies the appropriate clinicians when the scores exceed certain parameters

ISAAC is web-based, patients can access where Internet connection is available

Technology enabling the “Gold Standard” The technology puts patients in control of their own symptom assessment as patients’ perceptions of how they feel are considered the gold standard ISAAC enables clinicians to have access to current and previous information relating to patient symptoms, regardless of where the patient was seen and where they entered their scores – in clinic, at home, or at another cancer centre

The technology puts patients in control of their own symptom assessment as patients’ perceptions of how they feel are considered the gold standard

ISAAC enables clinicians to have access to current and previous information relating to patient symptoms, regardless of where the patient was seen and where they entered their scores – in clinic, at home, or at another cancer centre

Patient satisfaction 85% thought ESAS was important to complete because it helps providers to know how they are feeling 70% preferred the kiosk/internet version of ESAS over the paper tool 61% agreed that their providers took ESAS symptom ratings into consideration when developing a care plan 62% indicated that their pain and other symptoms have been controlled to a comfortable level Patients enjoyed learning to use the computer - even if they were unsure at first Among those patients who provided frequent enough ESAS scores to measure symptom improvement, 69% saw their pain scores reduced within 72 hours

85% thought ESAS was important to complete because it helps providers to know how they are feeling

70% preferred the kiosk/internet version of ESAS over the paper tool

61% agreed that their providers took ESAS symptom ratings into consideration when developing a care plan

62% indicated that their pain and other symptoms have been controlled to a comfortable level

Patients enjoyed learning to use the computer - even if they were unsure at first

Among those patients who provided frequent enough ESAS scores to measure symptom improvement, 69% saw their pain scores reduced within 72 hours

Impact of data we are collecting… Documentation of symptom severity is often lacking in patient charts Measuring a reduction in symptom scores over time is not practical through chart auditing Measurement of symptom scores over time became possible through the use of ISAAC Four regions in the province were able to measure whether high symptom scores reduced within 72 hours of assessment In these regions, over two-thirds of patients with high pain scores saw a reduction within 72 hours

Documentation of symptom severity is often lacking in patient charts

Measuring a reduction in symptom scores over time is not practical through chart auditing

Measurement of symptom scores over time became possible through the use of ISAAC

Four regions in the province were able to measure whether high symptom scores reduced within 72 hours of assessment

In these regions, over two-thirds of patients with high pain scores saw a reduction within 72 hours

Patients : “ This is very easy to use.” “ I often forget to tell the doctor and nurse how I’m feeling, so this is great.” “ I’d like to do this at home so that my doctor knows how I’m feeling when I’m not coming to the clinic.” Patients : “ Well that makes sense; I can’t remember how I felt last week / last month.” Clinicians : “ This is helpful in picking up new and arising symptoms immediately.” Here’s what patients and clinicians are saying…

Patients :

“ This is very easy to use.”

“ I often forget to tell the doctor and nurse how I’m feeling, so this is great.”

“ I’d like to do this at home so that my doctor knows how I’m feeling when I’m not coming to the clinic.”

Patients :

“ Well that makes sense; I can’t remember how I felt last week / last month.”

Clinicians :

“ This is helpful in picking up new and arising symptoms immediately.”

Lessons learned and implications for practice

Will there be more emphasis on the data collection and less on the patient/clinician interaction? What is the clinicians’ role regarding the data collected and the e-mail alerts? Is there an impact on the patient/clinician interaction as a result of patient’s inputting their symptoms into a computer instead of communicating them directly to the clinician? Patient/clinician interaction issues

Will there be more emphasis on the data collection and less on the patient/clinician interaction?

What is the clinicians’ role regarding the data collected and the e-mail alerts?

Is there an impact on the patient/clinician interaction as a result of patient’s inputting their symptoms into a computer instead of communicating them directly to the clinician?

Home-based use: more work to be done Learning curve for patients Not everyone is comfortable using ISAAC and some would rather fill the information out on paper Shift in roles as patients take on the task of completing the ESAS Technology barriers Not everyone has a PC and internet at home Supporting all clinicians including those visiting the patient at home Kiosks work well, are easy to use and prompt patients to complete ESAS before clinic appointments At home visits are more challenging and the completion of ESAS online may not be done in a timely manner. Visiting clinicians without mobile PCs will be challenged to get access to electronic information Ongoing challenge exists of ensuring information collected at home becomes part of the patient record Information integration – supporting clinician workflow and integrating ISAAC into the electronic health record is challenging

Learning curve for patients

Not everyone is comfortable using ISAAC and some would rather fill the information out on paper

Shift in roles as patients take on the task of completing the ESAS

Technology barriers

Not everyone has a PC and internet at home

Supporting all clinicians including those visiting the patient at home

Kiosks work well, are easy to use and prompt patients to complete ESAS before clinic appointments

At home visits are more challenging and the completion of ESAS online may not be done in a timely manner. Visiting clinicians without mobile PCs will be challenged to get access to electronic information

Ongoing challenge exists of ensuring information collected at home becomes part of the patient record

Information integration – supporting clinician workflow and integrating ISAAC into the electronic health record is challenging

Technology Issues Challenges and Opportunities

Technology Issues

Challenges and Opportunities

Five key technology-enabled success factors Support for multiple means of access Ease of use Central hosting Integration Support for Local Registration Authority

Support for multiple means of access

Ease of use

Central hosting

Integration

Support for Local Registration Authority

Key success factors Multiple means of access access securely over the web Internet banking class of security validated under Threat Risk Assessment access via ‘kiosk’ at participating hospitals coming soon: telephone access Ease of use very easy for all users: patient, clinician, site admins CCO engaged expert services in design of User Interface all screens simple, uncluttered, appealing colours and graphics very clear as ‘what to do next’ clear positive feedback at each click histogram views comprehensible at-a-glance

Multiple means of access

access securely over the web

Internet banking class of security

validated under Threat Risk Assessment

access via ‘kiosk’ at participating hospitals

coming soon: telephone access

Ease of use

very easy for all users: patient, clinician, site admins

CCO engaged expert services in design of User Interface

all screens simple, uncluttered, appealing colours and graphics

very clear as ‘what to do next’

clear positive feedback at each click

histogram views comprehensible at-a-glance

Centrally hosted relieves technology burden at site level provides economy of scale hardware support account management security and privacy enables sharing of patient data between hospital and CCAC – single instance of data e-mail alert behaviours configurable by site makes integration more challenging Key success factors cont’d.

Centrally hosted

relieves technology burden at site level

provides economy of scale

hardware

support

account management

security and privacy

enables sharing of patient data between hospital and CCAC – single instance of data

e-mail alert behaviours configurable by site

makes integration more challenging

Integration sites indicate strong interest in: single sign-on: accept user credentials from hospital portal patient registration: data flow from ADT feed EMR integration: push ISAAC data into local EMR for single source of truth highly challenging to implement requires provincial-level integration engine costly: requires up-front $ and ongoing care-and-feeding increases scope of security risks varying degree of readiness among participating hospitals technically feasible, within CCO’s experience, but unfunded at present Key success factors cont’d.

Integration

sites indicate strong interest in:

single sign-on: accept user credentials from hospital portal

patient registration: data flow from ADT feed

EMR integration:

push ISAAC data into local EMR for single source of truth

highly challenging to implement

requires provincial-level integration engine

costly: requires up-front $ and ongoing care-and-feeding

increases scope of security risks

varying degree of readiness among participating hospitals

technically feasible, within CCO’s experience, but unfunded at present

Key success factors cont’d. Support for Local Registration Authority key requirement for security is positive user identification Common barrier to registering users on a provincial scale known, designated individual at each site creates and manages accounts for their site standard form legal agreement enabling this role technical tool provided by CCO meets test for positive ID also employed in Wait Times Information System

Support for Local Registration Authority

key requirement for security is positive user identification

Common barrier to registering users on a provincial scale

known, designated individual at each site creates and manages accounts for their site

standard form legal agreement enabling this role

technical tool provided by CCO

meets test for positive ID

also employed in Wait Times Information System

Future work Under the umbrella of CCO’s Palliative Care Improvement Program: implement ISAAC for all palliative cancer patients broaden use of standard clinical assessment tools and standard symptom management guidelines an underpinning tool to support Collaborative Care Plans full provincial data capture feeding regional performance indicators and CCO’s BI environment Further technical improvements: integration: single sign-on, ADT interface, push data to EMR telephone-based access to the system Blue Sky Blackberry, iPhone or wireless tablet deployment in CCAC

Under the umbrella of CCO’s Palliative Care Improvement Program:

implement ISAAC for all palliative cancer patients

broaden use of standard clinical assessment tools and standard symptom management guidelines

an underpinning tool to support Collaborative Care Plans

full provincial data capture

feeding regional performance indicators and CCO’s BI environment

Further technical improvements:

integration: single sign-on, ADT interface, push data to EMR

telephone-based access to the system

Blue Sky

Blackberry, iPhone or wireless tablet deployment in CCAC

Final Thought: Beyond Cancer ISAAC is an on-line survey tool, based on standard ESAS and mobility measures ESAS and mobility measures are more broadly applicable (clinically) beyond palliative cancer patients potential exists for use beyond cancer care Under appropriate license, CCO will supply source code (i.e. the system itself) to public sector healthcare organisations, gratis

ISAAC is an on-line survey tool, based on standard ESAS and mobility measures

ESAS and mobility measures are more broadly applicable (clinically) beyond palliative cancer patients

potential exists for use beyond cancer care

Under appropriate license, CCO will supply source code (i.e. the system itself) to public sector healthcare organisations, gratis

Questions? For more information, please contact: Dafna Carr, MBA Director, eHealth Strategy & Partnerships [email_address] Steve Hall, MSc. Chief Technology Officer [email_address] Visit the Cancer Care Ontario web site at: www.cancercare.on.ca

For more information, please contact:

Dafna Carr, MBA

Director, eHealth Strategy & Partnerships

[email_address]

Steve Hall, MSc.

Chief Technology Officer

[email_address]

Visit the Cancer Care Ontario web site at:

www.cancercare.on.ca