Using Technology to Improve the Patient Experience in Cancer Care

Using Technology to Improve the Patient Experience in Cancer Care Summary of the Cancer Quality Council of Ontario June 2009 Signature Event Monday, ...
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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

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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 

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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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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.

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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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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.

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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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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.

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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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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

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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

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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.

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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.

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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

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Clinicians are in control of which patients they see via telemedicine

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Patients are offered accessibility

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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