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Using Technology to Improve
the Patient Experience in
Cancer Care
Summary of the Cancer Quality Council of Ontario
June 2009 Signature Event
Monday, June 8, 2009
The Toronto Marriot Bloor Yorkville
Toronto, Ontario
In partnership with:
Cancer Quality Council of Ontario Members
Chair
Vice Chairs
Members
Michael Decter
Dr. William Evans
Dr. Robert Bell
Julia Abelson, PhD
Arlene Bierman, PhD
Adalsteinn Brown, PhD
Virginia Flintoft
Deborah Gillis
Dr. Richard Lewanczuk
Dr. Michael Marcaccio
Rolly Montpellier
Dr. Carol Sawka
Terry Sullivan, PhD
Acknowledgments
The Cancer Quality Council of Ontario (CQCO) expresses its appreciation to the patient participants,
speakers, and panelists for their contribution to expanding our knowledge base and setting the stage
for an action plan to improve the models of care. CQCO would also like to thank the members of the
event Steering Committee as well as individuals from Oncology Education at Princess Margaret
Hospital/University Health Network as well as Cancer Care Ontario staff, including staff from the CIO
Portfolio, for their dedicated contribution to organizing and coordinating this event.
CQCO Steering Committee
Dr. Bob Bell, Co-Chair
Dr. Carol Sawka, Co Chair
Doug Gosling
Tupper Bean
Ed Brown
Lee Fairclough
Dr. Shelly Fine
Nadir Hirji
Donna Kline
Sylvia Leonard
Lewis O’Brien
Peter Rossos
David Wiljer
Harpreet Bassi
Dafna Carr
Katya Duvalko
Brendon Lalonde
Oonagh Maley
Cassandra Sinclair
Dana Wilson-Li
Oncology Education, Princess Margaret Hospital/University Health Network
David Wiljer
Sara Urowitz
Menaka Pulandiran
The CQCO also expresses its appreciation to the Secretariat staff for all the planning and logistical
support that made the event possible.
Disclaimer
The materials in this report have been compiled as a summary of the proceedings of the CQCO
Signature Event, Using Technology to Improve the Patient Experience in Cancer Care, held in Toronto
on June 8th 2009. The CQCO has made every effort to ensure that these materials represent an
accurate summary of the proceedings. Cancer Care Ontario does not make any representation or
warranty as to the completeness, accuracy or currency of the information contained in this report,
including, without limitation, any information derived from data sources.
For additional information contact:
Cancer Quality Council of Ontario Secretariat
Cancer Care Ontario
620 University Avenue
Toronto, Ontario M5G 2L7
416.971.9800 ext 1247
Using Technology to Improve the Patient Experience in Cancer Care
ii
Table of Contents
Biographical sketches of speakers ............................................................. 1 1.0 Welcome and introduction .............................................................. 5 2.0 Setting the context .......................................................................... 6 The imperative, possible solutions and the questions that need to be asked .................. 6 3.0 Transforming care ............................................................................ 7 Transforming public healthcare: The Danish eHealth Portal (www.sundhed.dk) .............. 7 4.0 A debate: Hurry up and wait – Passion and prudence on the road ................ 8 5.0 Transforming the paradigm: High impact, low cost, low tech solutions ........ 10 6.0 Transformations along the patient journey .......................................... 11 6.1 InfoWell ............................................................................................... 11 6.2 My Health Passport.................................................................................. 12 6.3 Tele-Oncology through Ontario Telemedicine Network ....................................... 13 7.0 Through the patient lens, perspectives on the patient and caregiver
experience ........................................................................................ 15 8.0 Transforming healthcare systems: The American Well experience ............. 17 9.0 Empowering patient connections ....................................................... 18 9.1 Connecting the dots: Easing the administrative burden of patients ........................ 18 9.2 Connecting people: Cancer survivorship communities ....................................... 19 9.3 Connecting and supporting: Palliative care ..................................................... 19 10.0 Wrap-up and concluding remarks ..................................................... 20 iii
Using Technology to Improve the Patient Experience in Cancer Care
Biographical sketches of speakers
Ruth Ackerman
Ruth Ackerman graduated from the Faculty of Pharmacy at the University of Toronto in 1980
and received an MBA from the Rotman School of Management at the University of Toronto in
1991. Since graduation she has practised as a pharmacist and managed community pharmacies
in various locations in Ontario. Her current position is Senior Vice President of Operations at
MediResource, where she is responsible for medical content, Professional Affairs and Project
Management. She also represents Corporate and Consulting pharmacists on the Board of the
Canadian Pharmacists Association – a national pharmacist advocacy group. She was diagnosed
with Stage 3 breast cancer in November 1999. She underwent surgery, six months of
chemotherapy and six weeks of radiation. She currently volunteers with the Canadian Cancer
Society’s peer support network.
Robert Bell
Dr. Robert Bell was appointed as President and CEO of University Health Network in June
2005. An internationally recognized orthopaedic surgeon, health care executive,
clinician-scientist and educator, he brings more than 20 years of experience in academic
health care to leadership of Canada’s largest research hospital. He earned a Doctor of
Medicine degree from McGill University and a Masters of Science degree from the University
of Toronto. He completed a Fellowship in Orthopaedic Oncology at Massachusetts General
Hospital and Harvard University. He is a Fellow of the Royal College of Physicians and
Surgeons of Canada, the American College of Surgeons and the Royal College of Surgeons of
Edinburgh.
Harvey Max Chochinov
Dr. Harvey Max Chochinov is the Chair of the Canadian Virtual Hospice, a Distinguished
Professor of Psychiatry at the University of Manitoba and Director of the Manitoba Palliative
Care Research Unit, CancerCare Manitoba. He holds a Canada Research Chair in Palliative
Care and is a member of the Governing Council of the CIHR. He is co-editor of the Handbook
of Psychiatry in Palliative Medicine and the Palliative and Support Care journal. He is a
Fellow of the Royal Society of Canada and the Canadian Academy of Health Sciences.
Shelly Cory
Shelly Cory is Executive Director of the Canadian Virtual Hospice. She holds a Masters of Arts
degree in Political Studies and has worked at senior levels in the private and public sectors in
four provinces. In her position as Senior Policy Advisor to the Honourable Sharon Carstairs,
Minister with Special Responsibility for Palliative Care, she helped develop the foundation for
the Canadian Virtual Hospice. Most recently, she was a consultant providing strategic counsel
to national and regional organizations on government relations, policy, marketing, and
communications.
Michael B. Decter
Michael B. Decter is a Harvard trained economist with over two decades of experience as a
senior manager. He is a leading Canadian expert on health systems, with a wealth of
international experience. He serves as President and Chief Executive Officer of the
investment management firm, LDIC Inc. He also served for six years as the Chair of the
Canadian Institute for Health Information and is the Chair of the Cancer Quality Council of
Ontario and Wait Times Data Certification Council of Ontario. He is also a board member of
Border Crossings and the Walrus Foundation. In 2004, he was awarded The Order of Canada.
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Using Technology to Improve the Patient Experience in Cancer Care
Rocco Gerace
Dr. Rocco Gerace was appointed Registrar of the College in May 2002. Dr. Gerace graduated
from the University of Western Ontario in 1972. He is a fellow of the Royal College of
Physicians and Surgeons of Canada in Emergency Medicine. He continues as a professor in the
Department of Medicine, Division of Emergency Medicine at the University of Western
Ontario. In addition, he is Adjunct Professor of Medicine at the University of Toronto and a
Past-President of the Medical Council of Canada.
Doug Gosling
Doug Gosling is a volunteer and member of the Community Advisory Committee at Princess
Margaret Hospital and is currently participating in a number of initiatives related to cancer
patient empowerment and technology. He has a Bachelor of Commerce degree from the
University of Toronto's Rotman School of Management and an MBA from the Schulich School of
Business at York University. He has worked in information technology for over 25 years. He
was initially diagnosed with prostate cancer in 2002 and is now fighting advanced, metastatic
disease. While he battles the pain and side effects of the cancer and his treatments, he
continues to pursue an active career as Vice President, Business Development for a global
software company.
Kevin Leonard
Kevin Leonard is an associate professor in the Department of Health Policy, Management and
Evaluation, Faculty of Medicine at the University of Toronto. He is also a research scientist
with the Centre for Global eHealth Innovation, University Health Network. He received his
Ph.D. from the Joint Doctoral Program in Montreal where he specialized in Statistics and
Information Systems Theory for Business. He has two primary areas of research: 1) the
implementation of electronic health records along with researching issues pertaining to the
development and implementation of patient-focused information technology (Patient Health
Records), and; 2) the creation and implementation of metrics for performance measurement
of the information technology investment within healthcare.
Carole Mayer
Carole Mayer is a registered social worker with a broad range of clinical, administrative,
community and research experience in oncology. She serves in a variety of supportive care
capacities at the Regional Cancer Program in Sudbury where she is the Clinical Lead and
Manager of the Supportive Care Program, Supportive Care Oncology Network, Supportive Care
Oncology Research Unit and Sudbury Genetic Counselling Services. She is currently completing
her doctorate at Memorial University of Newfoundland and has a faculty appointment with the
Northern Ontario School of Medicine. She is involved with several provincial and national
committees related to the clinical practice and research in psychosocial oncology.
Cheryl Moyer
Since early 2007 Cheryl Moyer has been a member of a care giving team in support of a cousin
with breast cancer, especially in seeking and translating information. Her cousin’s treatment
is at Princess Margaret Hospital and Women’s College Hospital. She worked for the Canadian
Cancer Society as National Director for over 25 years in public education and primary
prevention/early detection. From 2000 to 2006, she also had responsibility for tobacco
control research and supportive care for people living with cancer. She participated in many
national and international activities related to education and advocacy, for instance, a
national telephone peer support program and cancer information service for the Canadian
Cancer Society, a patient bill of rights for the national cancer strategy, and patient forums
for other countries. She retired in 2006 for health reasons and has her own issues relating to
treatment, recovery and permanent disability from nerve damage.
Using Technology to Improve the Patient Experience in Cancer Care
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Morten Elbæk Petersen
Morten Elbæk Petersen has been Managing Director of the National Danish e-Health Portal
since May 2002. He holds a Master’s degree in Economics and Social Science from the
University of Odense. He has worked in the healthcare sector for 16 years in managing
positions, with a primary focus on planning, quality development, prevention and health care
IT. He has been External Lecturer at the Department of Marketing and Management at Odense
School of Business and Economics and has also been responsible for several courses and
education in other contexts – e.g. national courses given by the Association of Danish Regions
to county health and health insurance planning employees.
Alan Powell
Alan Powell is director of Internet Services at The University of Texas M. D. Anderson Cancer
Center in Houston. He and his team provide leadership for the centre’s online strategies,
encompassing the external website, intranet, and secure portals for patients and referring
physicians. The team provides comprehensive services in technology development, technical
operations, content management, and interactive marketing.
Carol Sawka
Dr. Carol Sawka is Vice President, Clinical Programs and Quality Initiatives, and Chair of the
Clinical Council for Cancer Care Ontario. Since 1988, she has been a Medical Oncologist at
Toronto Sunnybrook Regional Cancer Centre where she specializes in the management of
breast cancer. Her research interests include health services, quality of life and clinical trials
in breast cancer. She is an Associate Professor in the departments of Medicine, Public Health
Sciences, and Health Policy Management and Evaluation at the University of Toronto. She is a
member of the University Of Toronto Department Of Medicine Quality Committee and the
Ontario Wait Time Advisory Committee.
Roy Schoenberg
Roy Schoenberg is the President and Chief Executive Officer of American Well Systems. He
serves as American Well Systems' CEO and is the inventor of the American Well™ concept. He
directs the company's product development and the company's Operations divisions. Prior to
founding American Well, he was the inventor and founder of CareKey Inc., a software vendor
offering electronic health management systems. Roy is the author of numerous publications,
talks and books in the area of Medical Informatics, many of which he published during his
work at the Center for Clinical Computing at Harvard's Beth Israel Deaconess Hospital. Roy
holds an MD from the Hebrew University Medical School and an MPH in Healthcare
Management from Harvard University.
Neil Seeman
Neil Seeman is Director and Primary Investigator of the Health Strategy Innovation Cell at
Massey College, University of Toronto. The Cell’s vision (www.innovationcell.com) is to
identify low tech, low cost ideas to make the user experience in health care perfect. A
former research lead in Health 2.0 at IBM, lawyer, and newspaper health editor, he is an
Adjunct Professor of Health Management at Ryerson. He has written widely on patient-led
innovation. He holds a law degree from the University of Toronto and Master’s of Public
Health from Harvard.
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Using Technology to Improve the Patient Experience in Cancer Care
Scott M. Sellick
Scott M. Sellick, is a Clinical Psychologist and Associate Research Scientist in Psychosocial
Oncology at the Cancer Centre in Thunder Bay. He is also Director of Palliative and Supportive
Care at the Thunder Bay Regional Health Sciences Centre and holds a number of adjunct
appointments at Lakehead University including the Northern Ontario School of Medicine and
Schools of Psychology, Public Health, and Social Work. He has integrated research with
clinical practice both in the area of screening patients for psychosocial distress and in
tobacco cessation. He has been instrumental in implementing clinical practice guidelines in
psycho-oncology.
Rick Skinner
Rick Skinner is the newly appointed Vice President and Chief Information Officer at Cancer
Care Ontario. A health care IT Executive with over 25 years’ experience in healthcare
information systems, including positions as the CIO for hospitals, a medical research
laboratory, independent consulting and as project manager for the development and
implementation of the Department of Defence’s global medical information system.
Terrence Sullivan
Terrence Sullivan is President and Chief Executive Officer of Cancer Care Ontario. He joined
the provincial cancer agency in 2001 and occupied successively responsible positions in
preventive oncology/research, he holds faculty appointments in the departments of Health
Policy, Management and Evaluation and Public Health Sciences at the University of Toronto.
Among his voluntary commitments, he is Vice Chair of the Ontario Agency for Health
Protection and Promotion and he chairs the Performance Committee of the Canadian
Partnership Against Cancer.
Sara Urowitz
Sara Urowitz is the Manager of Educational Informatics at the Princess Margaret
Hospital/University Health Network. Her portfolio includes leading Caring Voices
(www.CaringVoices.ca), a national social networking initiative which enables survivors to
connect from across the country in real-time and through forums. In addition to providing a
platform for peer-to-peer support, Caring Voices, provides barrier-free access to health care
professionals and community organizations. She is currently involved in research that explores
providing people with access to elements of their electronic health record, coupled with
tailored education information.
David Wiljer
Dr. David Wiljer is the Director of Knowledge Management and eHealth Innovation for
Oncology Education and the Radiation Medicine Program at Princess Margaret
Hospital/University Health Network. He is also an Assistant Professor and the Director of
Continuing Education in the Department of Radiation Oncology in the Faculty of Medicine at
the University of Toronto. He is the founding Chair of a national working group, the Canadian
Committee for Patient Accessible Electronic Health Records (CCPAEHR), dedicated to
involving patients in their EHR.
Using Technology to Improve the Patient Experience in Cancer Care
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1.0 Welcome and introduction
Michael Decter, Chair, Cancer Quality Council of Ontario
In opening the proceedings, Michael Decter, Chair of the Cancer Quality Council of Ontario
(CQCO), introduced the June 2009 Signature Event, which focused on the use of technology to
improve the patient experience in cancer care. The patient journey is an important area of
interest to the CQCO, which has been working to improve measurements and reporting of the
patient experience. Michael highlighted the aim of the event: to showcase technology
innovation used to change and improve the patient experience in cancer care, and to engage
patient survivors in the discussion on how to best measure the patient experience.
In preparation for the event, Dr. Carol Sawka took part in an online interactive discussion
with health professionals, patients and their families conducted through the Caring Voices
website. Michael noted that the input from this interaction along with the discussions at the
Event would inform the resulting strategies and recommendations. Participants were also
urged to return to their institutions with one actionable idea that could be implemented
immediately to improve cancer care.
Doug Gosling, Patient Representative, Signature Event Planning Committee
Doug Gosling welcomed the attendees to the Signature Event as the patient representative on
the Signature Event Planning Committee. He talked about the importance of electronic tools
in assisting the patient in the cancer journey. Doug is a volunteer member of the Community
Advisory Committee at Princess Margaret Hospital. He has spent 25 years in information
technology and has been fighting cancer for over seven years. Throughout his cancer journey,
Doug has used electronic tools, particularly the Internet, to find information and help him
understand his diagnosis, treatment options and side effects. Access to information has
helped him make informed decisions and have more collaborative discussions with his health
care team. It has also given him confidence in the care he has received. However, access to
this kind of information can be very confusing and very difficult and the truth is that a lot of
people don’t have the technological know how to seek it out on their own. Today, Doug
devotes a significant amount of his time to ensuring that as many people as possible have
access to the information that they need.
Rick Skinner, Chief Information Officer, Cancer Care Ontario
As CIO, Rick Skinner welcomed attendees by talking about his vision for how information
technology could dramatically improve the health care system and the opportunity to realize
this vision. Rick started with the focus of today’s meeting, which is the patient, and what can
be done to improve that patient’s experience in the cancer care system.
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Using Technology to Improve the Patient Experience in Cancer Care
2.0 Setting the context
The imperative, possible solutions and the questions that need to be asked
Carol Sawka, Vice President, Clinical Programs and Quality Initiatives,
Cancer Care Ontario
It is estimated that by 2017 there will be approximately 400,000 patients living with cancer.
Hence it seems incumbent upon us all to improve the patient experience. The question that is
being addressed today is: how can technology help us enhance the patient experience?
Many organizations have already embarked upon the use of various e-tools, which tend to be
organized roughly around principles of chronic disease management. For example, shared
care models that link cancer
National Snapshot of specialists with other elements of the
Ehealth Initiatives
TELEcancer system such as primary care
PORTALS
HEALTH
and Community Care Access Centres,
focusing on improving integration and
coordination of care. E-tools are also
ONLINE
Information
COMMUNITIES
organized around principles of patient
ONLINE
self-management, which include face&
INFORMATION
to-face
and
online
interaction
Communications
mechanisms.
Finally, tools are
Technologies
organized around the concept of
PHR
TETHERED
better provision of personal and
generic information.
CHRONIC
NAVIGATION
DISEASE
PREVENTION &
Various discussions with patients and
MANAGEMENT
caregivers regarding the effectiveness
of e-tools have demonstrated that
Lots of work underway!
they want better and timelier
communication, participation in the
decision-making process and access to accurate and relevant information. Patients also
discussed the importance of e-tools as a way of providing emotional support. However, there
are concerns around the loss of privacy, control and access to personal information, the loss
of the human element (particularly when there was a change in prognosis or unsettling test
results), barriers to access and the accuracy of information.
Much of the emphasis to date has been on information exchange. However, patients clearly
highlighted the need for discussion with their health care provider, for example, to
understand test results. Unfortunately, our system is not currently set up for electronic realtime communication. There is still a significant amount of work that needs to be completed
to re-design the system and embrace technology at the level that patients and caregivers
desire.
There is currently a very ad hoc approach to the use of e-tools and e-communication.
Additionally, various regulatory and privacy issues must still be addressed. Discussion is also
needed around the way providers see themselves and their work in light of these innovations.
Finally, it is assumed that these advancements are beneficial. However, there is limited
critical assessment and evaluation undertaken to determine how these tools improve the
patient experience.
Using Technology to Improve the Patient Experience in Cancer Care
6
3.0 Transforming care
Transforming public healthcare: The Danish eHealth Portal (www.sundhed.dk)
Morten Elbæk Petersen, Director, Sundhed.dk
The overall goals of the Danish eHealth Portal are to
empower users, enable communication between
patients and health care providers, and place expert
information at the disposal of health care
professionals. The portal provides patients with
access to their own relevant data and medical
history. For example, patients can look up their
hospital admission, diagnosis, treatment, prescribed
medications and referrals. This information is
available to the patient’s GP or any other treating
physicians (See Box 1).
The portal also supports provider decision making.
For instance the e-medicine record offers
information on drugs the patient has been
prescribed, Web access to laboratory data, research
databases, contact information, quality indicators,
and wait lists.
Box 1
The portal offers patients the
following features:
ƒ A directory of names and addresses
for the Danish health care sector
ƒ E-booking, email consultations with
the GP and e-commerce with the
pharmacist
ƒ Patient to patient online dialogue
(monitored chats)
ƒ Online access to the patient’s
medical data and medical history
ƒ Online price comparison
ƒ Prevention and treatment information
ƒ Waiting list information and patient
satisfaction measures by hospital
department
ƒ Health laws and regulations
Denmark has made it a priority to offer nationwide
free access to most health care services, regardless
of the patient’s economic situation. All employees within the health care sector, including
physicians, are salaried according to general agreements. All Danish citizens have a personal
identifier from the Danish Civil Registration System, which is the main supplier of basic
personal information to public authorities and the private
sector. These are all factors that make the Danish health
“The general practitioner (GP) is
system very homogeneous and make it possible for the
the gatekeeper to the hospital
portal to be successful.
sector. In Denmark the GPs keep
90% of patients in their practice
and only 10% get through to the
specialist level at the hospitals.
If this figure changes by even 1% it
means that the waiting list for the
hospital rises by 10% to 15%.”
One of the biggest challenges for developing the portal
stemmed from the difficulty of bringing together the
various partners and organizations behind the portal and
getting them to sustain a steady focus on maintaining the
content and services. Another shortcoming was a lack of a
comprehensive evaluation of the program. Continuous
work is also being undertaken to increase the number of patients who are using the portal.
However, positive feedback on the portal suggests that the net savings are approximately
900,000 consultations and an estimated 4,000 to 10,000 kilometres in transport. The portal
allows patients to improve their self-care, creates online dialogue among patients with similar
diseases, and encourages knowledge transfer.
DISCUSSION HIGHLIGHTS
ƒ Getting physicians to embrace the portal was a stepwise program. First, the government
stated that physician billing must be submitted electronically; hence encouraging
physicians to purchase or upgrade their IT systems in order to get paid. Then the
government approved e-mail consultations for reimbursement; hence physicians started
using email. This pattern continued for electronic prescription renewals.
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Using Technology to Improve the Patient Experience in Cancer Care
4.0 A debate: Hurry up and wait – Passion and prudence on the road
Kevin Leonard, Research Scientist with the Centre for Global eHealth Innovation
“Patients are destined to become more empowered and have greater access to information in
the health care system.”
Information technology allows access to information, decision support, knowledge and
ultimately evidence. The advent of technology has allowed the patient to become much more
efficient and effective. The power of information is evident when it is integrated, when it is
put together in some sort of format. Isolated, fragmented data on paper is impossible to put
together, hence a paper-based system is not feasible to promote patient empowerment.
As someone who has been living with Crohn’s disease for the last
40 years, Kevin Leonard wants to be active and engaged in his
care. The last thing he wants is to see a new provider and have
to recount his care journey from the first diagnosis. Having
information electronically improves the communication for both
the patient and the provider. Not everyone with a chronic
condition wants to manage their own care but those who do are
extremely motivated.
“While technology is not
for everyone, it is for
some people, and these
people are called the
Three C’s: Consumers with
Chronic Conditions.”
Chronic disease management is something that has taken hold and is driving the need for
information. It is time to create an environment that contains all of the patient’s health care
needs, medications, diagnostics, doctors, and referrals and ensure that all this information is
contained in one place. Finally, it is important to highlight that the information belongs to
the patient, and that the patient should be able to see it. After all, the patient is “the guy on
the table.”
Doug Gosling, Patient Representative
“I speak for all patients when I say, it’s my health and my body, and I want a say in it.”
In the olden times when a patient was sick, doctors would cut into the body with crude knives
or treat the patient with special concoctions. Modern doctors burn their patients with
particle accelerators, perform surgery with Gamma Knives or robotic instruments and treat
their patients with new concoctions. The difference is that today people are living longer,
being cured or having their lives significantly extended due to technological innovation.
Current technology consists of more than tools for burning and cutting. For instance, the
Internet has opened up doors that allow patients to get the information they need. Medical
results and records are now stored electronically and can, in some cases, be accessed by the
patient. But more needs to be done to standardize the way information is recoded and
stored, and to find ways for everyone, regardless of education,
“Technology must be
language or computer skill, to access it. The system needs to evolve
leveraged because
from the historical, patriarchal doctor-patient relationship to a
the status quo is just
collaborative partnership where doctors can discuss rather than
not good enough.”
dictate and where patients have faith in their diagnosis, have a say in
their treatment, make informed decisions, and feel confident in their doctors and their
treatment. This type of change is needed and technology plays a strong role in achieving it.
Using Technology to Improve the Patient Experience in Cancer Care
8
Rocco Gerace, Registrar, College of Physicians and Surgeons of Ontario
“As Einstein said ‘it has become appallingly obvious that our technology has exceeded our
humanity.’ ”
The system is faced with rapidly evolving change, change that may be occurring at the
expense of people. Recently the College was given the responsibility of helping health
professionals respond to advances in technology, ensuring that they
“There must be a
are aware of the various advancements. It is important to realize that
balance in terms of
technological innovation cannot be made at the expense of patienttechnology and
centred care and much consideration needs to be placed on the best
ethical.”
way to move technology forward.
Patients generally have little understanding of the complexity of their disease; they are
subjected to potent treatments - often life altering treatments. Patients often feel isolated
in their journey. They have hope, they have fear and respect for their disease, and it is the
health care provider’s’ job to help them through that journey. While technology is important
it must be tailored to the patient. The patient’s needs must always come first. For those
patients who are technologically able, technology should be embraced. However, if a patient
is not technologically able, health care providers must not lose sight of their needs. Patients
are the reason for this event and it is important not to move beyond patients for the sake of
technology.
Scott Sellick, Director, Supportive & Palliative Care, Thunder Bay
“I just found a hammer, and everything I see is a nail and it needs a hammer. Hammering is
good for you and hammers will fix everything.”
While technology is good for some, it is not good for others. Not everyone has access to the
Internet and sometimes that’s for good reason. Some studies have demonstrated that
searching online for information increased patients’ anxiety. This may be due to the fact that
find reliable and informative articles online can be next to impossible and the uncertainty and
anxiety factors often increase threefold.
Those who go online to seek information most often are generally those most in need of
support because they are not finding it where they live. They are also the most anxious, most
distressed, most in need. Unfortunately the literature supports the notion that these patients
often walk away even more anxious and distressed and don’t go back online. Some people get
more and more scared the more they read, some don’t know how to read, some just prefer
not to read and some don’t have anyone to read to them.
Using technology solves some problems, but it also creates new ones. When someone comes
looking for a person, be it a therapist, a clinician, an educator, a researcher, a real life
person, it is because they want help and maybe a human touch, therefore it is not enough to
address their issues by making a website more user friendly and interactive. Technology is
not for everyone, because there will always be those patients who are very happy to drive
four hours to see their physician, their care team, and talk to them in person.
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Using Technology to Improve the Patient Experience in Cancer Care
5.0 Transforming the paradigm: High impact, low cost, low tech solutions
Neil Seeman, Director, Health Strategy Innovation Cell, University of Toronto
The history of the health care paradigm has always been related to low tech and low cost
innovations that improve the patient experience. Improved communication at the point of
care or changing governance models at the board level to improve accountability and
transparency are examples of simple innovations that dramatically changed the patient
experience. The main goal is not to change the paradigm, but rather to think about the
adoption of technology in a way that services the paradigm.
0.2 seconds: Amount 0.2 seconds is the amount of time it takes the average person using
Google to receive accurate, reliable information. 0.2 seconds is
of time it takes the
also the amount of time it takes a GP to get back accurate reliable
average individual to
information. Although the terms “accurate and reliable” are
blink their eye,
according to Google.
debatable, it’s important to keep in mind how much slower the
system was in getting “accurate and reliable” information before
the advent of the Internet. The most fundamental issue is whether or not there is a need to
invest in expensive top-down government solutions to synthesize and purify that information
or whether it is enough to look at what patients are already doing to naturally aggregate and
filter it.
14: In 2006, IBM released a white
paper stating that the amount of
data on the Internet – this includes
social networks, emails, blogs, etc.
– was doubling every 14 days.
Free: the most
popular word
typed into Google
The number 14 is significant because the prior
doubling rate had been 100 days. This was also preTwitter, and in fact today the actual doubling of data
on the Internet probably takes six or seven days, which
means that there is access to increasingly reliable and
accurate information every 0.2 seconds.
A lot of what is paid for in health care, at the government,
organization, or provider level, can be attained for free or almost
free. This includes materials such as content management, disease
management, real time pandemic surveillance and stakeholder
analytics. However, information doesn’t only have to be free; it also
has to be elegantly organized for people to want to use it.
As new portals are built to meet this need it’s crucial to take into consideration the level of
patients’ technological use because many patients are already on Facebook, Twitter and
blogs. There is currently a perfect storm in health care; there is a period of time where
patients are learning about snapshots of excellence from around the world and wondering
why there is so much variance. Part of the answer is not in changing the paradigm but in
listening to the paradigm that has always existed, which is focusing on low-cost and low-tech
innovations.
DISCUSSION HIGHLIGHTS
ƒ Credit Valley uses electronically based patient charts, improving the ability to share
information among providers and patients. They have also developed a portal amongst
the hospitals within the region and are using technology to improve the process of care.
ƒ The greatest value of technology at UHN was recognized in terms of improving access to
care, improving integration of information for patients but also in reducing the burden of
travel. Opportunities for patients to access health records and scheduling tools are also
being explored.
Using Technology to Improve the Patient Experience in Cancer Care
10
6.0 Transformations along the patient journey
6.1 InfoWell
David Wiljer, Director, Knowledge Management and Innovation, Oncology Education,
University Health Network
This work was carried out in the
context
of
the
Breast
Cancer
Survivorship Program, which is a
dedicated facility that examines how
breast cancer patients can be
empowered to participate throughout
the continuum of care. At the heart of
the program is the empowerment
model,
which
encompasses
the
individual, the organization and the
community. Data shows that 69 per
cent of patients would like access to
online charts, 80 per cent would like
personalized, relevant information and
83 per cent want access to test results.
Health Information: Chronic Disease
Individualized
content
Personal Health Information
Level of
Personalization
Experiential Health Information
General Health Information
Clinical Encounter
Generic content
Low
High
Level of SelfSelf- Management
Adapted from Kreuter et al., 2000
4
The idea behind InfoWell was to create a portal that was applicable for all of UHN. Currently
there are programs for diabetes, chronic kidney disease and breast cancer. InfoWell is a hub
for health information about the patient’s care team, protocols and treatments. It is meant
to be an educational platform but it is also working towards becoming a management tool for
patients where, for example, appointments can be scheduled.
A feasibility study was undertaken to examine how the patient portal works for breast cancer
patients. Focus was placed specifically on the issue of anxiety because it was believed that
the portal may increase anxiety levels. The study results showed that 95 per cent (114/120)
of patients felt that InfoWell was easy to learn and use, it helped them improve their
knowledge, and that they would recommend InfoWell to other cancer survivors. Anxiety
levels did not rise due to the portal. In fact, for most patients, levels of anxiety were slightly
reduced.
Patient and staff follow-up interviews showed a number of benefits of the portal, including:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Quick access to results
Time savings
Reduced patient anxiety
Patients feeling more prepared for appointments
Patients feeling more in control
Patients feeling more informed
Generally staff was satisfied with patients accessing results online but some were worried
that patients may not be able to interpret results accurately. Overall the study showed that
providing participants with access to some of their test results and reports did not have a
negative impact on patient anxiety levels. While patients would like access to all elements of
their health record, some deliberation around this issue is still required. A final lesson learned
was that education for staff and patients as well as collaboration with other organizations are
important for successful adoption.
11
Using Technology to Improve the Patient Experience in Cancer Care
6.2 My Health Passport
Miriam Kaufman, Adolescent Health Specialist, Hospital for Sick Children
My Health Passport is a transition, communication and patient education tool. The idea was to
develop a tool that would be free to patients and did not require any downloads. While many
authors have suggested that young people should enter the adult system with a health
passport, limited research exists on its usefulness. The formal development of the Health
Passport for teens and families at Sick Kids stemmed from this lack of patient knowledge and
communication between systems.
The passports are created by the provider together with the patients and their families. The
patient enters all the data via the Web interface with the hopes that this will facilitate
retention and ownership by the young patient. Young patients often lack a real sense of
owning their health information, because
they tend to think that this is the concern
of parents, nurses or doctor. By engaging
Phone Survey Quotes n=37
young patients in their own health
information, they are gaining a greater
ƒ “Some of the stuff that was on it, I didn't even
sense of ownership and hopefully selfknow about myself until they told me to put it
advocacy.
on the card.”
card.”
ƒ
“They helped me speak for myself.”
myself.”
in case something happens to
ƒ “It's just cool-cool--in
After many conversations with young people
me, they know a lot of stuff about me already.
it was evident that they did not want a
They know who I am, who to call, stuff like
cumbersome binder or a loose piece of
that.””
that.
paper that was going to be scrunched up in
ƒ “Well it's handy to have. Sometimes I don't
know the exact names of things.”
the bottom of their knapsack. What they
things.”
ƒ “I liked it. Just doing it.”
it.”
did want was something that was small and
portable, and that no one else knew they
had. They also didn’t necessarily want the
information electronically, (although many did). Based on this feedback, the printable Health
Passports were created so that they could be folded to the size of a credit card. They are
easy to carry around and kids are just simply keeping them in their wallets.
Currently there are 22 different online passport templates, and while there is no cancer
template, Sick Kids would be happy to make one. There is also a generic passport that can be
adapted to particular patient needs. Usually, Sick Kids is approached by others to develop a
template for a group’s particular needs.
Online and telephone survey results demonstrated that patients were satisfied with the
passports and find them easy to use. When patients have used the card they found it very
helpful, it made it easier to get care and almost all patients said that they carry it all of the
time.
There were some challenges along the way, for instance some patient groups are not
interested in using patient passports. There have also been some challenges with the
development of the templates and there continue to be software issues. However, funds
have been recently donated from the John Deere Foundation, which should help address some
of these issues.
Using Technology to Improve the Patient Experience in Cancer Care
12
6.3 Tele-Oncology through Ontario Telemedicine Network
Mark Hartman, Administrative Director of the Sudbury Regional Cancer Program
Tele-Oncology:
the delivery of clinical
oncology services from a
distance, often using an
interactive video
telecommunications system.
Tele-oncology at the Sudbury Regional Cancer Program is
conducted through the Ontario Telemedicine Network
(OTN). It provides health professionals with two-way
video-conferencing and tele-diagnostic devices to interact
with and examine patients from remote areas. OTN
provides a network between 40 communities throughout
the region.
The bulk of tele-oncology activity at
the Sudbury Regional Cancer Program
involves the Oncologist/Nurse team
who conduct follow-up visits in
communities
across
the
region
following
completion
of
active
treatment. The physician and nurse
teams, triage patients for suitability
and have integrated the tele-oncology
appointments
into
their
clinic
schedules. Studio Set up Providing care closer to home was
embedded in the mission of the
Sudbury Regional Cancer Centre in the
mid 90’s when it was identified that
there was a strong need for telemedicine. In 2001, North Network approached the cancer
centre to use telemedicine and within a year the equipment was installed and guidelines for
patient consultations were in place. The program has been growing consistently and projects
show that in 2009 there were close to 5,500
telemedicine visits. (See Box 2 for more details
Box 2
on success factors).
Tele-Oncology success factors:
Some of the challenges faced to date include
ƒ Suitable application for the
limited remote hospital resources, lack of space,
available technology
resources for early adopters and increased
scheduling workloads (approximately 1.5 times
ƒ Program is driven by patient need
more labour).
ƒ Low costs
ƒ
Clinicians are in control of which
patients they see via telemedicine
ƒ
Patients are offered accessibility
13
Expansions are now underway in other areas
such as psychosocial support, nutritional
support, genetic counseling and palliative
consultation. Finally, there is a great
opportunity to further research this service and
the value it provides.
Using Technology to Improve the Patient Experience in Cancer Care
6.3 Tele-Oncology through Ontario Telemedicine Network (Continued)
Carole Mayer, Clinical Lead & Administrative Manager for the Supportive Care Program and
the Supportive Care Oncology Research Unit, Sudbury Regional Cancer Program
In 2006, a nursing study was undertaken to assess patient satisfaction with tele-oncology,
including identifying the benefits, areas for improvement and which patient populations were
being seen. From May to August of 2006, over 698 surveys were distributed to patients
following their Ontario Telemedicine
Network (ONT) appointment.
Box 3
The results showed that most of the
patients were being seen for follow-ups
related to post-adjuvant treatment or
palliative treatment. None were first
consultations (See Box 3).
While the visual and audio feedback was
positive some patients indicated that
hearing impaired patients had some
difficulties hearing at times. To correct
for this event it was ensured that each
of the sites provide the option of using
headphones during the consultation.
Survey Results:
ƒ About 99 per cent of the participants
indicated that they would use OTN
again.
ƒ Patients indicated that it was easier to
travel to an OTN site than to the cancer
centre.
ƒ About 98 per cent of patients indicated
that their needs were being met by
their providers.
ƒ In terms of overall satisfaction, 91 per
cent of patients indicated that OTN was
as good as a face-to-face visit.
Additionally, some patients had to be
reassured that all the proper tests
would be ordered despite them
communicating via OTN.
Overall there was a high degree of patient satisfaction with telemedicine oncology visits.
Patients who seemed to benefit most were well patients who required limited interventions,
palliative care patients and patients monitored for local recurrence. There was overwhelming
support and praise for the nurse coordinators at the OTN site who spend time with the
patients after consultation. OTN reduced travel time, and ultimately resulted in reduced
costs for the patient.
Interestingly, some health care professionals used the technology more than others and so as
a result a study is being undertaken to learn why this was happening.
DISCUSSION HIGHLIGHTS
ƒ Concern was expressed that more research is needed on the impact, etiquette and
appropriate process of handing over charts to patients.
ƒ It is important to consider the purpose of the chart versus the purpose of the visit. If the
purpose of the visit is to share information and assist providers in defining what needs to
be done perhaps different ways of providing that visit should be considered. Similarly,
the chart is a source of information that providers use to plan the patient’s care, hence
the notion that physicians can pretend to be Hemingway and have freehand descriptions
doesn’t serve the purpose of what they are meant to do.
ƒ Technology is key in the transformation of what can be done in terms of how information
is recorded and how providers interact with patients.
Using Technology to Improve the Patient Experience in Cancer Care
14
7.0 Through the patient lens, perspectives on the patient and
caregiver experience
Kathy Klemarow, Ruth Ackerman, Cheryl Moyer, and Doug Gosling, in conversation
with Bob Bell, CEO, University Health Network
Kathy Klemarow
I am here today to speak to the prevention aspect of cancer and what helped me from the
technological point of view. I found a website called Smokers Helpline online and this site
was an integral part of my success in quitting smoking. The site is moderated 24/7 so even in
the wee hours of the morning when I was fighting my worst cravings, I could go online and
post my feelings, and I could get feedback from a moderator or another member who was
going through the same issues. It provides a lot of information on what to expect when you
are going through the various stages of quitting smoking. It’s a wonderful tool in helping me
succeed in staying smoke free, and I know that many other people using the site have also
been successful. When looking for online information, it’s easiest to start with Google, look
at large cancer societies for recommended websites and also check with your doctor. I think
that improving on technology and making it easier for patients to access their medical records
and giving them this peace of mind is key.
Ruth Ackerman
I was diagnosed with Stage III breast cancer in November of 1999, and back then the Internet
wasn’t quite as robust as it is today. Once I got the diagnosis, I went out and incorrectly rediagnosed myself and had to have my doctor calm me back down. So, yes, information is
great, but unless it is in context it can be misunderstood. I’m a pharmacist so it was really
important for me to find clinical practice guidelines because I wanted to know what my care
was supposed to be. I would keep track of my physicians and the guidelines and say “well it’s
been 5 weeks since surgery so I should be getting my chemo today.” Whether they liked that
or not it was some something I had to do.
I was quite alone in my journey, I had some support at home, but I needed to get out and talk
to more people. I found a breast cancer website with a discussion board where I could go and
read posts, I didn’t have to sign in or tell anyone that I had cancer. It opened up the whole
world for me with respect to information and reaching out to others. There is only so much
that you can grasp within that little window of opportunity when you talk with your physician,
and you tend to prioritize what you want to talk about. So when the rest of the questions
surface at two in the morning, I found that discussion boards were really helpful in calming
my anxieties.
Technology was also really helpful for the marathon chemotherapy tests where most of your
day is spent sitting in a waiting room. You often feel like you’re glued to the chair, you don’t
move, you can’t go to the bathroom because you fear that when you’re gone they will call
your name. It was a great relief having a pager and being paged when the chemo is ready. It
gave me the freedom and control to plan my day. However, face-to-face support groups with
patients are just as important and very beneficial in the cancer journey. Some people don’t
know where to start or may not be able to express themselves, and sometimes all they need
is to hear another person’s experience to help them open up. For our future goals, I feel that
everything needs to be on the Web, in a secure portal. But there is a fine line with
technology. For instance I don’t want you tell me that I have breast cancer over the phone,
but you can give me my test results or lab results online.
15
Using Technology to Improve the Patient Experience in Cancer Care
Cheryl Moyer
My cousin was diagnosed with locally advanced breast cancer, and to help her through the
journey we set up a “family support team.” My role was the “information seeker” and
“translator” because of my background in health. Basically my job was to find out how much
information she wanted, and when she wanted it, and then to search the Web for it. I also
went with her to see her physicians to help her get what I could out of those experiences. She
was actually using a very new procedure to shrink her tumour before surgery, and so I was
having a hard time finding information on it, but I was able to contact her providers who gave
us information from conference proceedings.
It’s important to note that not all patients want all the information all the time and, as in my
case, it’s not always the patient who is seeking out the information. The other person who
needs to have similar access to this information is the GP, because as in my cousin’s case she
had other co-morbidities that were being treated. Oftentimes having the right information
from all the other sources in time for the appointment was very difficult. For instance, some
test results would take longer to complete or were unavailable when needed.
Doug Gosling
I was diagnosed in 2002 with prostate cancer at the age of 49. I found it difficult to relate to
the available support groups because they were composed of and moderated by older men. It
was a good place for general information, but it wasn’t something I could relate to because I
was still working, had young kids and I felt that I was in a different situation. There was not a
lot of information out there on the emotional impact of cancer on the patient, on the
caregiver and on the immediate family, so I started a blog called “Talking about cancer.”
Many people still don’t know how much information is out there on the Web, and in many
cases don’t want to talk about how they feel.
I had a recurrence in 2007 and by that time I had become savvier on the Internet and begun
going into bulletin boards where I could meet other people in similar situations and I could
lurk or post. I am a very unusual case, because in July of last year I was diagnosed with bone
metastasis, meaning that at this stage my cancer is incurable, and so my biggest issue now is
dealing with side effects. I was put on hormone therapy, which slows down my cancer but as
a result of that I have developed severe fibromyalgia, which leaves me in constant pain and
requires treatment with morphine. But it wasn’t clear if this was due to the drug or not, and I
started to think that perhaps it was related to testosterone depletion, which is caused by this
drug. But I couldn’t find anyone who could help me with this, so I went back to my old
standard, which is Google and stumbled across a doctor who had done studies related to the
symptoms of fibromyalgia to testosterone. So at this point, I am tracking my levels of
testosterone to see if my fibromyalgia improves, and this will also tell me if I need to stay
away from drugs that drop my testosterone levels. This whole process is giving me some
control and hope for my treatment.
Using Technology to Improve the Patient Experience in Cancer Care
16
8.0 Transforming healthcare systems: The American Well experience
Roy Schoenberg, CEO, American Well (www.americanwell.com)
Various interventions allowing patients to interact with their health care providers are
currently being used. However, they are not the ideal interaction that patients are seeking
therefore American Well stepped in to fill the gap by introducing a product called Online
Care. Online Care is a technology that was built to bring together actual health care services
online. Online Care allows patients to interact with their physicians through technology,
encouraging
immediacy,
convenience,
documentation and other efficiencies from a
Box 4
cost stand point (See Box 4).
Other features of the Online Care System
Physicals let the system know that they are
ƒ The system indicates how much a
available to see patients, whether it’s from
patient will pay before connecting with
home using a browser or dialing in by phone
the physician.
from the office. The system then collects
ƒ Patients’ complete health history is
those
availabilities
into
pools
that
online.
correspond with a specialty. As physicians
log on and off, overall availability is
ƒ Patients determine which documents to
tracked, so that if a particular pool drops
share.
below a certain level in comparison to the
ƒ The archiving area of the system
demand, the system summons additional
generates detailed transcripts of
providers to sign in. Similarly, patients can
everything that happened between the
log into the system at any point in time and
patient and the physician.
talk to a physician about their issues.
ƒ Patients have access to the transcripts
and with their permission a summary
Patients: To find the right physician,
can be sent to their primary care
patients can let the system search for past
physician.
physicians they have interacted with, choose
ƒ The system has Web conferencing
based on specific criteria (such as sex,
capabilities.
language, or specialty), or search for a
ƒ At any point in time, with the click of a
physician based on a symptom they are
button either by the patient or the
experiencing. The system can generate an
physician, the system can generate two
action plan for the patient based on their
outbound phone calls, one to the
data, suggest reading materials, help track
patient and the other to the physician.
and measure specific aspects of their care,
ƒ Malpractice policies are automatically
suggest other specialists along with a list of
generated for each interaction the
topics that should be addressed.
physician has online.
ƒ All payment intricacies are done by the
Physicians: Physicians are notified when a
system.
patient wants to contact them and are
ƒ The system contains capabilities
provided with the topics of discussion and a
protecting whoever insures the patient
summary of the patient’s medical activity.
against utilization abuse.
If the physician feels that the patient may
be better served by seeing an oncologist, for
example, he can make the referral. The physicians have complete discretion as to how far
they want to progress the care of that patient and it is not required of them to provide the
care or make a diagnosis.
Lessons Learned: It is extremely important to involve legislators and medical associations
early and to allow the physicians to try out the system before they begin to provide care.
17
Using Technology to Improve the Patient Experience in Cancer Care
9.0 Empowering patient connections
9.1 Connecting the dots: Easing the administrative burden of patients
Alan Powell, Director, Internet Services, MD Anderson
myMDAnderson consists of a small family of secure Web portals for both patients and
physicians. The goals for myMDAnderson were oriented around the practical difficulties of
being a cancer patient. There was particular
focus on ensuring that patient’s changing needs
Box 5
and expectations were being met in a way that
ƒ A total of 87,000 patients signed
was compliant with the regulations around
up to use the portal.
security and privacy.
ƒ This number increased by about
2,000 patients a month.
Key features of the patient side of the portal
ƒ Patient log-ins per week is
include: support for pre-registration tests,
averaging at about 27,000.
appointment schedule access, email reminders
ƒ Patients are sending about
for appointments, patient education information,
4,200 secure messages a week.
routine demographic updates, prescription
ƒ There are about 4,800
refills, online billing and payment and secure
physicians signed up.
Web-based messaging.
ƒ This number increases by about
130 a month.
Recently myMDAnderson has also started
… More work still needs to be
providing access to medical record information
done to get people involved.
for patients and community physicians. Key
portal features for community physicians
include: a new patient referral process, secure
messaging, the ability to view the patient’s appointment schedule, access to a dedicated
physician relations team and access to the patient’s medical record.
Overall feedback has been very positive; people seem to find the system easy to use and
relatively intuitive (See Box 5). The limiting factors in terms of satisfaction have been how
much information can be put into the system and how quickly and effectively the medical
staff can respond.
Lessons learned:
ƒ The capacity, will and leadership must be present to enable adoption of these types of
tools. Only when they are really used do they provide a benefit.
ƒ Involvement and support from clinical operations leadership and physicians are crucial in
driving buy-in and utilization.
ƒ Providing resources for training is not an upfront activity, but rather something that is
ongoing.
ƒ The system must be so simple to use that it minimizes the impact on the physician’s time.
ƒ Our future work will focus on personal health records, document exchange, integration
with the public website, support for research activities, driving adoption and working on
addressing information anxiety.
DISCUSSION HIGHLIGHTS
ƒ There are things that are not appropriate for online care, there are also things that may
be appropriate, but it really depends on how tech savvy and informative the patient is.
ƒ The physician has the discretion to tell the patient that their issue is inappropriate for
online care and that they need to come in or go to the ER.
ƒ There are guidelines for both the patient and physician around what type of encounters
are appropriate for online care.
Using Technology to Improve the Patient Experience in Cancer Care
18
9.2 Connecting people: Cancer survivorship communities
Sara Urowitz, Manager, Oncology Education, PMH/UHN
There is a need for supportive care interventions such as peer support because of the high
prevalence of psychosocial distress that is often untreated in individuals living with or
surviving cancer. Caring Voices is an initiative of Princess Margaret Hospital but is also a
national platform, offering primarily support for individuals living with cancer. The site offers
various educational resources such as asynchronous and synchronous communication. The
platform was originally started for the breast cancer community but has now been expanded
to offer communication communities for a number of cancers. Within each community
members can access educational resources and can participate in programming geared
towards members of the community.
Lessons learned:
ƒ The success of a social networking community is only as strong as the individuals who are
regularly engaged in using it.
ƒ Offer patients the topics that they are interested in at the right time.
ƒ Offer sufficient support for the moderators, e.g. training sessions, mock chats, toolkits.
ƒ Research projects must be undertaken to demonstrate clinical relevance to gain support
from clinicians for the program.
9.3 Connecting and supporting: Palliative care
Harvey Max Chochinov, Chair, Canadian Virtual Hospice
The Canadian Virtual Hospice is a national, bilingual website dedicated to providing support,
personalized information about palliative end of life care, loss and bereavement. The site
enables people to be informed consumers. There are static aspects of the site as well as
interactive, transactional components that offer users personalized information. The goal is
to empower patients with information developed by an interdisciplinary clinical team, assist
in navigating the health care system and enable them to connect to a community of mutual
support. The website also provides researcher databases, a PallNet site, which allows for
communities of practice to congregate and share experiences. The Exchange section of the
site offers summaries of the findings and important research messages. Evaluative procedures
have also been undertaken to ensure the site is actually achieving what was intended.
Lessons learned:
ƒ Web-based platforms can deliver sensitive health information to vulnerable populations in
a thoughtful, caring way.
ƒ Navigation must be simple; people must be able to find what they are looking for easily.
ƒ Information and the sharing of information is not an emotionally neutral event. The
information online is often stripped of context, asking questions may not always be
possible and it is not possible to read non-verbal cues.
ƒ Interdisciplinary teams can work collaboratively and virtually with great success.
ƒ Anonymity allows people to seek information that they may have had difficulty otherwise
finding or requesting in person.
ƒ People want to know what to expect with an advanced illness.
ƒ Health care providers are also often seeking information online.
ƒ User experience trumps data collection (e.g. keeping registration to a minimal).
ƒ There is a reason why those who build websites are called developers and not completers
because it really is a process in evolution.
19
Using Technology to Improve the Patient Experience in Cancer Care
10.0 Wrap-up and concluding remarks
Terrence Sullivan, CEO, Cancer Care Ontario
This Signature Event has been a logical step from the Cancer Care Ontario Leadership Event
discussions on Health 2.0 and electronic supports that improve the patient experience. It has
been an incredibly rich and interesting day. Despite various challenges, at this very moment
in Ontario there are tremendous opportunities that must be acted on. Terrence Sullivan
expressed that he is personally sold on the idea that email is a useful way for providers to
communicate with patients, and that more work needs to be done on improving scheduling
abilities, populating regional websites and utilizing national cancer websites.
Rather than showcasing small, uncertain pilots or experiments, it was very encouraging to see
examples of things that are already working, examples of implementations of technology at
large scales which are improving the patient journey and interactions along the way. The
marvelous solutions presented at the event are encouraging opportunities to move forward
and translate into practice the various initiatives in the cancer sector. Ontario has been and
will continue to be a leader in advancing this front and, with strong leadership from the
entire cancer community, this can be attained in the very near future.
Using Technology to Improve the Patient Experience in Cancer Care
20