The Ottawa Hospital’s

Consultations on Cancer

Program Transformation

Project Report (Draft)

May 19, 2011

 The Ottawa Hospital’s Cancer program embarked on an innovative and largely unprecedented effort to engage their patients in a frank discussion about improving patient experience and adopting a more patient and family-centred approach to care.

The fruits of this effort will only be realized over the year ahead as the advice the Cancer Program received is refined, tested and ultimately adopted by program staff. What this means is that soon the Cancer Program will have new ways of working and interacting with patients and their families — new practices that have been developed in partnership with the patient and family members the program serves.

Too often, organizations pay lip service to the advice and recommendations offered by their constituents. Engagement means periodic surveys, evening information sessions and comment boxes.

The commitment made by The Ottawa’s Hospital’s Cancer Program to patient and family engagement goes far beyond any of this. The program contacted fifteen thousand recent patients and their family members. Hundreds of volunteers were recruited and ultimately thirty-six panellists were randomly selected to participate in an intensive learning and dialogue exercise: A process now known as the Patients’ Reference Panel on Cancer Program Transformation.

The Patients’ Reference Panel was designed to combine the direct experience of patients and their family members with a balanced and detailed view of the operational abilities of the Cancer Program. It also drew together doctors, nurses and other program staff in a broader conversation to identify those priorities that could have the most dramatic effect on the experience of patients and family members.

Overall, the members of the panel were highly complimentary regarding the quality of care they or their family members received from the Program. They frequently acknowledged the hard work of staff and the high caliber of their clinical skills. They also noted that the expectations of patients have changed dramatically.

Today, more and more cancer patients are beating cancer to return to their lives and families. Cancer treatment is rightly described as a journey. Along that journey, they:

Stressed the heightened importance of improving access to information and enhancing communication, ensuring that it is both “proactive” and “two-way”.
Identified the need for more assistance navigating what all acknowledge is a complex and sometimes circuitous diagnosis and treatment regimen.

Highlighted the economic realities of patients, stressing the serious financial strain many patients experience as they undergo treatment.

Noted the importance of a more holistic, or total body approach to care, that would provide more nutritional, psycho-social, and restorative therapies and services.

Patients'
Reference Panel on Cancer Program Transformation Project Report
Asked for more opportunities to be included and regarded as an essential member of the care team

Suggested a renewed focus on relationships between medical staff so that care becomes more fully team-based; between the program and other health practitioners so that there is greater consistency across the continuum of care; and between the program and its many stakeholders, patients and family members first among them.

Ultimately the panel put forward 108 recommendations categorized according to the four stages of care. Their recommendations were discussed and further refined during a joint session of patients, physicians and nurses. A list of these shared priorities also appears in this report.

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The Panel Process 8081The first phase of the Transformation Project was comprised of a series of six meetings. First, physicians and staff met separately to learn about the Patients’ Reference Panel, and to consider what the adoption of a patient and family-centerd care model would mean for The Ottawa Hospital’s Cancer Program. Physicians and staff also discussed whether there were gaps in the patient experience that needed to be addressed. The Patients’ Reference Panel met during three Saturdays in March and April 2011. The Panel had four tasks: . Share their experience of the Cancer Program and learn from the experiences of others

 Suggest values and a vision for patient-and family-centerd care at The Ottawa Hospital Cancer Program

 Identify the major issues affecting the patient and family experience in each of the four stages of cancer care (prevention and screening, diagnosis and assessment, managing treatment, support and follow-up) and provide advice on how they can be made more patient-and family-centerd

 Draft a final report to TOH which will help to guide the next phases of the Cancer Program Transformation Project.

The first phase of the Transformation Project concluded with a special daylong session that brought together physicians, nurses, staff as well as many of the members of the Patients’ Reference Panel. Together, they worked to understand each one's concerns and reach agreement on the priorities that would set the agenda for the second phase of the Transformation Project. The Civic Lottery The Patients’ Reference Panel members were selected through a process known as a “civic lottery”. In an unprecedented effort, The Ottawa Hospital sent 15,000 invitations to the households of every cancer patient who had sought treatment at the center in 2010. The invitation letters informed recipients about the Transformation Project and asked them to volunteer to be a part of the Panel. Remarkably, 1,083 people responded to the invitation.  declined the offer to be on the Panel, but requested updates about the process. Several responded to the invitation with personal letters, regretting their inability to participate on the panel but applauding the efforts to reach out so widely to the patient community. Ultimately, from among the 1181,083 respondents, 403 patients and family-members volunteered to serve on the Patients’ Reference Panel. From the pool of volunteers, thirty-six were randomly selected to be panallists. This included twenty-four current or former patients, as well as twelve family members. Consideration was given to ensure gender parity, and to ensure that the Panel was broadly representative of the age, geography, and language profile of the community.

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The lottery also produced a panel that was broadly representative of the distribution of cancer types among the Cancer Program’s patient population. Physician and Staff Sessions March 9 and 11, 2011 Physician and Staff sessions were held the week preceding the Patients’ Reference Panel. The two groups met separately during similar three-hour sessions. The groups received a briefing about the Panel process and had a short discussion about what they expected to hear from patients and family members, and what they hoped the process would achieve. They conducted two activities, both of which were also completed by the Patients’ Reference Panel. We’re busy and understaffed. When there’s a long list of things to do, compassion and sensitivity can get lost. It’s unfortunate...but the other stuff is about saving lives.” – Cancer Program nurse The first activity compared the values they felt characterized the current care provided in the Cancer Program to those they thought defined a patient and family-centred model of care. The second evaluated the strengths and weaknesses of four phases of cancer care according to the impact on patient experience. The physicians initially expressed doubt about the Transformation Project, and the notion of patient and family-centred care. Many felt that their input into previous consultations had produced few results. They questioned whether the concepts of ‘transformation’ and ‘patient-centred care’ were really about marketing rather than medicine, and insisted that the care they provide is already “patient-centred”. Each year I learn more about the constraints we work under, in the health care system and in our particular centre. I’m hoping to see changes in the process and how we communicate that stem from your work on this Panel, so other patients can see we think about their experience in the improvements we make.” – Cancer Program nurse Though they were cautious about the terminology, there was strong agreement among the physicians that patient experience could and should be improved. They were curious about the Panel process and hopeful that the results would be comprehensive and result in action by the administration. The staff group, which included volunteers, was less wary of the idea of transformation, or patient-and family-centred care. Staff discussed barriers to effective communication and interdisciplinary teamwork, as well as the gaps between family doctors and the Cancer Program during a patient’s diagnosis and post-treatment. Like the physicians, they too felt as though previous consultations had gone nowhere, and were hoped that this time would be different. Panel Day One Saturday March 19th, 2011

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Despite being mid-March, the temperature was nearing twenty below as panellists arrived to the Cancer Centre on Saturday morning. The Panel sessions were held in the main atrium of the Cancer Centre, where many patients wait for their appointments. The panellists knew this place well, except that this time as they walked into the atrium, shaking off the cold, it looked different. The reception chairs had been cleared away, replaced by round tables covered in craft paper. Huge white umbrella canopies had been set up amongst the tables, and flip charts were scattered throughout the room. Music was playing. Panellists removed their coats and began to chat in small groups. The feeling was immediately collegial and informal. The program began promptly at 9:30am. Dr. Jack Kitts, president and CEO of The Ottawa hospital, welcomed panellists to the first day of the Patients’ Reference Panel. He expressed his gratitude for their time and volunteer effort, assuring them that their advice and recommendations would be taken seriously and used in concrete ways to improve the experience of care in the Cancer Care Program. Vice President Paula Doering spoke next, encouraging the Panel members to speak openly and honestly about their experiences, noting that Cancer Program staff and executives want to hear “the good, the bad, and the ugly” of patient and family experience. Greg Dorion, Clinical Director of the Cancer Centre, also assured to the Panel that their work would not be censored, and that their advice would be invaluable. He walked Panel members through the timeline and process of the Transformation Project, explaining how the Panel’s work would contribute to the broader project. Meeting one another After the Panel host explained the Panel process, Panel members were invited to stand up and spread out across the room as if it were a large map of the region, standing in the approximate location of their hometown. Panellists introduced themselves and briefly talked about why they had volunteered to be a part of the Panel. Here is what some of them had to say:
“I had breast cancer in 2004. It changed my life so dramatically that I wanted to stay involved.” •
“I’m 21, the baby of the pack. I was diagnosed with Hodgkin’s in November. Ijust finished my last treatment on Friday. I’m going to the University of Ottawa. I’m here to voice my opinion and talk about my journey. Talking with others will help me.”
“I represent my son who passed away in November. He spent a lot of time here where he was an in-patient. I have lots of ideas I know he’d like me to pass on.”
“I am the mother of a 10 year old boy. In 2005 I was diagnosed with thyroid cancer, which is the best cancer to have. They operated, took it out, and it’s 226gone. I’m here to give back.”
Panel members shared their experiences as patients and as the family members of patients. Some had been living with cancer for decades, some were survivors, and others were at the beginning of their cancer journey. Though their experience was varied widely, all of the Panel members expressed an eagerness to learn more about how the Cancer Program worked, and a desire to play a part in improving cancer services for future patients and their families. An Inside Look at Cancer Services The Panel members spent the remainder of the morning and half of the afternoon getting a behind the scenes look at the Cancer Program and hearing directly from hospital staff and physicians. One nurse and one physician came to represent their peers and tell the Panel about the gaps they see in patient care, and their hopes for the Panel process. Heather Lloyd Easy,
a nurse in the diagnostic clinic, told the Panel about the challenges for both patients and staff in navigating between silos in cancer care, and bridging the gulf between family physicians and the Cancer Program. Dr. Shail Verma, a medical oncologist, spoke about the history of the cancer center and noted that logistical problems remain from the amalgamation of the Cancer Program with The Ottawa Hospital in 2004. He also stressed the importance of patient advocacy. The Panel also toured the Cancer Program at TOH, to see all the areas of the hospital where cancer services are provided and hear first hand from the people who work there. Half a dozen staff members had volunteered their Saturday to show the panellists around their department and explain what they do. At the Cancer Assessment Clinic panellists visited the new patient resource library and learned about the development of a decision-making tool to help patients and their families decide which prostate cancer response was right for them. In Module L, where physicians and staff work in small teams to treat patients, the panellists had many questions about team organization and coordination. In the new Cancer Centre participants were impressed at the Hospital’s investment in cutting-edge technology, such as the Cyber-Knife, capable of administering radiation therapy with sufficient accuracy to treat eyes, and even moving parts like lungs. Panellists asked many questions of all their guides, and groups often looked to a Panel member who had first-hand experience in that area to answer questions. They probed into the rationale of some operating procedures, such as visitor limits, and looked to popular initiatives such as the bell of hope , a bell patients ring to signify their final treatment, for ideas that could be replicated or expanded. Selecting Values Back at their tables in small groups, the Panel turned to its last activity of the day. Just as the physicians and staff had done in their sessions, the Patients’ Reference Panel selected from a list of one hundred values the eight values that define the current state of care, and eight that define a patient and family-centred model of care. Once each table made their selections they shared their chosen values in a final plenary session. The two sets of values revealed the difference that a patient and family-centred model might achieve.

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​   The ‘current care’ values were generally seen to describe a system geared for excellent clinical care. All groups agreed care is efficient and precise; caregivers are dedicated and well meaning. The ‘patient and family-centred care’ values retain these qualities, but describe a more integrated system in which the patient is more involved. Values such as "accessible" "accountable" "collaboration" "equity" "holistic" " supportive" were common among groups considering patient and family-centred care, though largely absent from current care. "Specialized", "effective", "established", and "confident" were among the current values but absent from patient and family centred-care. The Panel had narrowed a list of one hundred possible values to define patient and family-centred care to thirty-one. Before the Panel adjourned for a weeklong break, they were tasked with homework. Each member was asked to interview one or more friends, neighbours or colleagues who had experienced cancer to discuss their experience, and describe the values they felt characterized the care they had received. The panellists left the first session eager to reach out to others.

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  Panel Day Two Saturday March 26, 2011 One week later, the Patients’ Reference Panel began their second session by sharing their findings from their homework interviews. Every panellist had spoken to at least one person, and many who were members of support groups and community organizations had asked their peers for input at meetings, and several Panel members sent group emails to solicit more voices. Between them, Panel members had spoken to over 200 people about patient and family-centred care. Panellists brought these views to bear on their conversations throughout the day.        Panel members revisited the values they had selected the previous Saturday. They were each given a large chart that compared the physician, staff and patient and family member values. The Panel compared each group’s elections. Some were surprised to find there was greater alignment on the values for patient and family-centred care values than on current values. Current care had only two values in common among all three groups: Expertise and Commitment. There were twice as many shared values describing patient and family-centred care: Accountability, Compassionate, Quality, and Supportive. The Panel was challenged to take their aggregated list of thirty-one values and narrow their selection. In small groups and then in plenary panellists considered which of their selected values were most integral to achieving a patient and family-centred model of care. The group agreed on ten, but decided to take them up again the following week to further refine and define their values. Next, panellists mapped their cancer care experience from the beginning to the present day. Each panellist was given a long chart designed to resemble an EKG. On it they were asked to mark the high and low points of their patient experience. Panellists spread out around the room, some speaking quietly to each other, others working off of notes that they had prepared at home. All took great care to give the hospital a clear

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    Understanding of what the cancer journey is like from the patient and family perspective, and how certain policies, or the action of individuals affects the patient experience. Perspectives on cancer care Three speakers presented to the Panel on facets of cancer care. Dr. Gad Perry, Interim Head of the Division of Radiation Oncology, spoke about the immense amount of coordination required among many professionals to give patients the best possible care. Dr. Perry also noted that because all people process information and emotions differently, physicians often struggle to give patients the right amount of information at the right time. Amber Killam, a Registered Nurse with the Outpatient Program, identified the transitions between care providers or phases of care as the moments when communication is most likely to break down, just when patients and their families need it most. Carrie Liska, a Care Facilitator with the Champlain Regional Cancer Program, acknowledged the communication gaps, noting that patient involvement in decision making
and tighter response-time protocols for health staff would improve these gaps. She also stressed the importance of patient advocacy and liaising between the Centre, the community, and the satellite programs. Mapping the issues in four stages of care After lunch, panel members switched tables and shared their “experience maps” with their new tablemates. During their conversations, panellists identified common instances when the care they received exceeded their standards, and times when the system didn’t perform. They looked systematically at their experiences to find the root causes of why some were better than others. Each table received four charts, one for each stage of cancer care: Screening and Prevention, Diagnosis and Assessment, Managing Treatment, and Support and Followup.
    Panellists spent the next thirty minutes listing the strengths and weaknesses of each stage according to their experiences. The room was reorganized again, this time into four large groups, one for each stage of care. Panellists selected the stage of care that interested them the most. The new groups were tasked with combining the six charts for that phase of care, creating one master list that also ranked the strengths and weaknesses according to which would have the greatest impact on patient and family experience. Panellists engaged in heated discussions over how different patient populations would be experience each issue. They shared their results in a concluding plenary session. Some began to brainstorm recommendations to alleviate the weaknesses they had identified. The following week the Panel would return to their issues charts and produce recommendations for all of the identified issues. In preparation for their final task the Panel was given their homework assignment for the week. The Ottawa Hospital had been running an online Patient and Family Survey for over a month. The survey was open to everyone who had first hand experience in the Cancer Program, and had received hundreds of responses. Panellists were asked to study the results of the Patient and Family Survey and compare the responses to the interviews they had conducted, and to their own experience. Panellists left the meeting with a shared sense of pride and a feeling of accomplishment. The Panel adjourned for the weeklong break before the final session.

    Panel Day Three 391Saturday April 2, 2011 The panellists arrived on the third and final session to find the atrium of the Cancer Centre once again transformed. The experience maps from the previous week had been put up on display, covering one entire wall of the meeting space. Paula Doering and Greg Doiron opened the Panel session by remarking on the experience maps. Paula called them “Unbelievable”, acknowledging how difficult it must 3have been for some people to revisit their experiences. Both Paula and Greg enthused about the effect the Panel process was having in the hospital. “Staff and physicians are revved up. We have the momentum we need to put your recommendations forward.” The Panel was invited to return to the hospital the following Saturday to present their recommendations to a joint session of staff and physicians. The Panel had a brief conversation comparing their reflections on the Patient and Family Survey Results, and then set to work. Today the Panel was given their most important task: producing final recommendations for how to improve the patient and family experience of cancer care. Panellists returned to the four topic tables from the week before: Screening & Prevention, Diagnosis & Assessment, Managing Treatment, and Support & Follow up. Each table reviewed the issues they had identified the previous week and received a series of discussion questions to guide their deliberation. Panellists worked in these groups to draft their recommendations, sometimes moving between tables to another topic to which they wanted to contribute. At intervals the Panel returned to plenary, and each group reported to the others and gathered feedback or revisions. In the afternoon, two new topic tables were opened; a “Wild Card” table for recommendations that didn’t fit neatly into any one of the four categories, and a “Vision and Values” table. The Vision and Values table worked to define each of the ten values the Panel had previously selected and craft a statement of purpose for patient and family-centred care at TOH. Panellists continued to move between the tables, sometimes sending a delegate to take an important recommendation or consideration to another group. By 3:30pm the Panel had completed their work. The tables assembled their recommendations into a large multi-page report, with each table topic forming a chapter. From the podium each table took turns presenting their chapter of the report. Some tables sent a single speaker, while others chose to come up together and to take turns. A round of applause from fellow panellists followed each presentation. They had produced a statement of purpose for patient and family-centred care, defined a set of guiding values and generated 108 recommendations to improve the patient and family experience.

    Paula received the Panel’s recommendations on behalf of The Ottawa Hospital. She commended the Panel for their clear, detailed, and enlightening recommendations. “You today...were unbelievable. We could not have come up with a better 36 to come up with these recommendations.” Panellists finished by gathering for a group photo. As they left, each was presented with a framed certificate from The Ottawa Hospital in recognition of their commitment and hard work. The Panel adjourned satisfied in the completion of a momentous task. As one panellist remarked, “I have been asked several times about the sacrifice I’ve made for the last three Saturdays, but it hasn’t been a sacrifice it’s been a privilege.” Joint Session Saturday April 9, 2011 One month after the Panel process began, the final joint session of staff, physicians and panellists was held at The Ottawa Hospital. By now spring was in bloom, but despite the temptation of a sunny Saturday, ninety people convened on a Saturday morning to contribute to the Transformation Project. The group included physicians and staff from virtually every department in the Cancer Program at TOH. Sixteen members of the Patients’ Reference Panel joined them. Jack Kitts opened the proceedings. He thanked the panellists for having committed to four Saturdays in a row, some of them having travelled a considerable distance to do so. He also thanked the physicians and staff for agreeing to meet, listen and discuss the recommendations that the panel had put so much work into producing. Paula Doering followed, commending the Panel’s results and encouraging the staff and physicians to build on their work. Peter MacLeod, the session host, followed with a presentation of the Patients’ Reference Panel process including pictures from each Panel session and videos of the panellists explaining their work. Presentations and Recommendations Next, everyone took a moment to introduce themselves and ensure that there was an even mix of physicians, staff and patients at each table. Then two members of the Patients’ Reference Panel presented the Panel recommendations. They read out the Panel’s statement of purpose for patient and family-centred care, the guiding values, and the recommendations for each stage of care. The remainder of the morning was devoted to small group discussions evaluating the  recommendations put forward by the Panel. Each recommendation had been printed on a card, colour coded by stage of care. Every table was given a complete deck, and charged with selecting three recommendations from each stage of care that the group felt were most important.

    For the next hour, physicians and staff of all specialties worked alongside patients and family members to reach consensus. Though there were many instances of heated discussion, many participants were surprised at how easy it was to reach agreement. At the end of the morning, each table presented their list to the room. Each group recounted their discussion and the decisions they had made. It became clear there were many points of overlap across the groups. On behalf of his team, Jack thanked the Panellists for their contribution. Over the lunch break the patients and family members departed, leaving the shortlist of recommendations the physicians and staff would use in the afternoon. Afternoon: Setting Priorities After lunch, the tables were reorganized into five large tables, each devoted to one phase of care, with one table for the ‘wildcard’ recommendations. The selected recommendations were redistributed across the five tables. Participants sat at whichever table topic interested them the most, and though they were invited to move from table to table, few chose to do so. Each table was divided into four ‘quadrants’ with two intersecting lines. The line from top to bottom represented the continuum from ‘Easy’ to ‘Hard’, while the line from left to right represented the continuum of ‘Convinced’ to ‘Not Convinced’. Each topic table was tasked with assigning their stack of recommendations to a location along the two continuums. They had to decide as a group which recommendations they were most committed to, and which they felt were simplest to accomplish. Once every recommendation had been assigned, participants took a tour around the room to review each table and hear a summary of the discussion from each group. Each presentation was followed by questions and brief conversations so each group could gather feedback to revise their decisions. Returning to their tables, the participants embarked on their final task: to provide specific advise for each of their chosen recommendations. For those recommendations the group assigned to the ‘Unconvinced’ side of the spectrum they were asked to provide the rationale for their decision. For those assigned to the ‘Convinced’ side of the spectrum they recommended next steps to be taken in phase II of the Transformation Project. In a final plenary, each table took a few minutes to present the last of their work. They offered concrete, practical actions TOH could take to realize the recommendations, with detailed descriptions of possible challenges. They considered financial implications, scheduling, infrastructure, and expressed confidence that many recommendations were both doable and necessary. In the concluding discussion, the room expressed a cautious optimism in the next stages of the Transformation Project. One physician praised the Panel’s recommendations for their ‘sophistication and insight’, and others expressed their admiration for the Panel’s results. Many said that despite their initial skepticism that the process would be “another smoke and mirrors thing that will come and go with nothing done”, they now felt that “they [the administration] really do want to go down this path together with us.”

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Themes and Observations

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“Hearing their recommendations was one of the best experiences I’ve had in more than 28 years.” – Paula Doering, VP, Clinical programs, Surgery, Cancer Program, Diagnostic Imagining Throughout the process, one constant was the commitment to excellence in clinical care. Patients and family members above all valued the Cancer Program’s ability to treat and cure. The one hundred and eight recommendations are intended to help TOH improve patient and family experience, and be more responsive to the individual needs of patients throughout their journey. Across all one hundred and eight recommendations there were many common themes. Improving System Navigation Patients and family members, staff and physicians all acknowledged the cancer care is challenging, both in terms of understanding treatment and physically finding one’s way around the hospital. Many recommendations focus on orienting patients to their treatment plan, their care team, and their surroundings. Increased navigational assistance is particularly needed at points of transition between caregivers or stages of care. Navigation recommendations include:
Provide tours of the Cancer Program, both in person and online so patients can orient themselves to their surrounding before beginning treatment.

Expand the CAC’s cancer journal program, so all patients can document their journey and receive helpful information that they can access at their own pace.

Connect the patient to former patients or a trained Navigator to tell them what to expect from each stage of treatment.

Institute a joint appointment process so the patient can meet all the members of their care team at once

Consider a designated patient Navigator to guide the patients throughout their journey

Both patients and TOH personnel agreed the navigator function is important and needed. The staff and physicians felt that all care providers could be better equipped to orient patients, diminishing the necessity for a designated Navigator position. This is true, but patients were adamant about the necessity of consistent personal contact.

Enhancing Communication & Information The recommendations stressed the heightened importance of improving access to information and enhancing communication, ensuring that it is both ‘proactive’ and ‘two way’.
This includes communication within the Cancer Program, between the Cancer Program and care providers in the community, and between care providers and patients and family members.
Expand staff access to scheduling information across departments, to improve

customer service and streamline the appointment process.

Adopt a single data system across the Cancer Program.

Institute a double-appointment process for diagnosis so patients and their family members can prepare in advance.

Consider a permission system so patients can allow designated individuals to access information and discuss a patient with care providers.

Provide information that is clear, concise and in laymen’s terms. Include a glossary of medical terms.

Research an online patient portal, where patients and designated care providers or family members can access and update the patient’s treatment information.

Develop an information program and system to educate patients on clinical trails.

Both panellists and staff and physicians were mindful that any online or shared system must be secure, private, and patient-initiated. Staff and physicians had further reservations about the risks of patients learning possibly traumatic information through an online record. Further research into a patient portal would have to include restrictions, particularly around diagnoses and assessment.

Addressing Financial Pressures Combating cancer can be costly, and for low-income or fixed-income patients it can be devastating. Many patients struggle not only with treatment but also with supporting 601themselves during the journey. Acknowledging and responding to the economic situation of patients will diminish patient stress and preserve their dignity.
Inform patients of their prescription options, including the costs of various drugs.

Invest in transit to and from the Cancer Program: limit the number of passengers per vehicle and coordinate rides with patient treatment schedules.

Consider alternate parking rates for low-income or fixed-income patients.

Inform patients of the range of parking options at the outset of treatment, and provide advice as to which option would best suit their treatment needs.

Simplify and streamline the process for collecting supporting documents for patients applying to ODSP.

Adopting a whole-patient approach to health “‘You’ve got cancer’ has got to be one of the worst things a person could ever hear. Every person reacts differently…but one thing that is a ‘given’ is that all hospital staff – from the cleaner to

    The nurses and doctors – should treat patients with respect, dignity and understanding while imbuing hope.” – PRP member Many recommendations noted the importance of a more holistic, or total body approach to care, that would provide more nutritional, psycho-social, and restorative therapies and services. These include:

Create rehabilitation and wellness clinic that would include exercise, 624physiotherapy, massage therapy

Develop program seminars to provide info and training to patients and family 626members on nutrition and exercise.

Research best practices in other cancer centres and develop an approval process 628for naturopathic oncology

Expand psycho-social support

The physicians were extremely cautious about recognizing – much less promoting – any form of alternative or complimentary medicine. They admitted however, that most patients practice some form of alternative therapy, and agreed on the importance of making patients feel comfortable sharing that information with their physicians. Physicians, staff and patients all declared TOH approval of alternative therapies would have to be based on evidence, though some physicians doubted that this was possible. Increasing patient participation “When I was lying on a flat hard slab getting X-rays, I never thought that I would ever be involved with 35 of you guys coming up with recommendations for how this hospital could possibly do any better. I’ve been listening to all of you with different treatments and points of view and it has been an enlightening experience, to say the least.” – PRP member All groups recognized the patient as an integral members of their care team, and many recommendations focused on methods of expanding or improving the quality of patient 649participation. These include: 650651•
Create patient-friendly charts and teach patients how to read them.

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Conduct training sessions with patients and care givers informing them about symptoms and side-effects (both physical and mental) and providing instruction on how to administer care.

Consult with patients regarding TOHCP budgeting and program changes before 656decisions are made.

Institute a regular patient audit of the patient and family experience.

Patients'
Reference Panel on Cancer Program Transformation Project Report

Develop decision-making tools (like that for prostate cancer) to help patients and their families understand their diagnosis and chose the treatment that's right for them.

Building Relationships “There were successes when there was empathy, compassion, and it was felt there was a high degree of competence. We identified failures when mistakes were made, the expertise was lacking, and when the treatment wasn’t timely.” – PRP member The panellists emphasized the importance of strengthening relationships: between medical staff so that care becomes more fully team-based; between the Cancer Program and other health practitioners so that there is greater consistency across the continuum of care; and between the Cancer Program and its many stakeholders, patients and family members first among them.
Partner with public health, business, and local schools to educate and raise awareness about cancer prevention and screening.

Develop information sessions for GPs to learn about the specific cancer profile of the catchment demographics and understand how the Cancer Program works for their patients; increase GP access to their patient's files at TOH.

Integrate surgeons into the cancer care team and involve them in face-toface
meetings with the patient pre and post treatment.

Encourage frequent face-to-face contact between the patient and their oncologist during treatment. This contact can be brief and informal, but is very powerful.

Allow exceptions of visitor limits so younger patients can have both parents present during treatment.

Both physicians and patient groups identified the need to improve the follow-up appointment process for recovering patients. Many patients continue with follow-up appointments as long as possible -as opposed to as long as necessary -simply to maintain contact with the Cancer Program. ​

​For More Infirmation On a Journey Through Cancer Please Feel Free to Contact Dennis Lewis

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