The Ottawa Hospital convened a reference panel to guide changes to its cancer treatment program. 36 randomly selected patients and family members met over three Saturdays to deliberate on and provide recommendations on making the cancer program more patient- and family-centred.
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Problems and Purpose
The Ottawa Hospital is located in Canada’s capital city, and serves 1.3 million people across the Eastern portion of the province of Ontario. In January 2010, The Ottawa Hospital’s Cancer Program (TOHCP) 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.
To host these discussions, the Patients’ Reference Panel was created. The Panel consisted of 36 randomly selected members, drawn from households with residents who sought treatment from the Ottawa Hospital’s Cancer Program in 2010.
Background History and Context
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Participant Recruitment and Selection
The Patients’ Reference Panel members were selected through civic lottery process. The Ottawa Hospital (TOH) sent 15,000 invitations to the households of patients who had sought treatment at the centre in 2010. The invitation letters informed recipients about the Transformation Project and asked them to volunteer to be a part of the Panel.
1,083 people responded to the invitation. Of those, 629 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 1,083 respondents, 403 patients and family members volunteered to serve on the Patients’ Reference Panel.
From the pool of volunteers, 36 were randomly selected to be panellists. This included 24 current or former patients, as well as 12 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. The lottery also produced a Panel that was broadly representative of the distribution of cancer types among the Cancer Program’s patient population.
Organizing, Supporting, and Funding Entities
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Methods and Tools Used
The citizens' reference panel methodology is similar to a citizens jury in its procedure: moving from a learning phase, to a deliberation, and then to a consensus-oriented finalization of recommendation. The learning phase is designed to ensure that each panelist had the opportunity to become better informed about the issue at hand, typically involving experts and officials in presentations and question-and-answer periods. The deliberation phase can take various forms and depending on the participatory technique used by organizers. The deliberation phase of reference panels allows participants to engage with the opinions and positions of others as they enter the final recommendations phase which requires collaboration to explain and justify the group's conclusions.
What Went On: Process, Interaction, and Participation
The Patients’ Reference Panel met during three Saturdays in March and April 2011. The Panel had four tasks:
1. Share their experience of the Cancer Program and learn from the experiences of others;
2. Suggest values and a vision for patient- and family-centred care at The Ottawa Hospital Cancer Program;
3. 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-centred; and
4. Draft a final report to The Ottawa Hospital (TOH), which will help to guide the next phases of the Cancer Program Transformation Project.
Pre-Panel: 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. Each group received a briefing about the Panel process and had a short discussion about what they expected to hear from patients and family members, as well as what they hoped the process would achieve. They conducted two activities, both of which were also completed by the Patients’ Reference Panel.
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. 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 the administration taking action.
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 also felt as though previous consultations had gone nowhere, and hoped that this time would be different.
Panel Day One Saturday March 19th, 2011
Panellists arrived at 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; this was a place Panelists knew well. However, this time 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 warm and informal.
The program began promptly at 9:30am, with president and CEO of The Ottawa Hospital, the Vice President, and the Clinical Director of the Cancer Center welcoming Panelists to their first day of the Panel, thanking them for their participation, and explaining how the Panel’s work would contribute to the broader Transformation Project the Ottawa Hospital was undertaking.
Following these introductions, Panelists had the opportunity to meet one another and share their personal stories and motivations for participating on the Panel.
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. Panelists toured the Cancer Program at TOH, to see all the areas of the hospital where cancer services are provided and hear firsthand from the people who work there. 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 about the patient experience. They probed into the rationale of some operating procedures, such as visitor limits, and looked to popular initiatives as the Bell of Hope, a bell patients ring to signify their final treatment, for ideas that could be replicated or expanded.
Finally, to close off Day 1, the Patients’ Reference Panel moved into small groups (at roundtables) to discuss, deliberate, and selected from a list of 100 values the eight values that define the current state of care, and eight more 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.
The Panel had narrowed a list of 100 possible patient- and family values to 31. Before the Panel adjourned for a week long 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.
Panel Day Two: Saturday March 26, 2011
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, compassion, quality, and support.
The Panel was challenged to take their aggregated list of 31 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 10, 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 ‘electrocardiograph’. 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 from notes that they had prepared at home. All took great care to give the hospital a clear understanding of what the cancer journey is like from the patient and family perspective and how certain policies, or the actions of individuals, affect the patient experience.
Following this activity, the Panel heard from three speakers on the different facets of cancer 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 did not perform up to standard. 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 & Prevention, Diagnosis & Assessment, Managing Treatment, and Support & Follow-up. Panellists spent the next 30 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 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, as well as their own experience.
Panellists left the meeting with a shared sense of pride and a feeling of accomplishment. The Panel adjourned for the week long break before the final session
Panel Day Three: Saturday April 2, 2011
The Panelists entered the meeting space to see their experience maps from the previous week up on display, covering one entire wall of the meeting space. The Panel began with a brief conversation comparing their reflections on the Patient and Family Survey results, and then set to work. 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 10 values the Panel had previously selected
and craft a statement of purpose for patient- and family-centred care at TOH. Panellists continued to move among 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.
An Ottawa Hospital representative received the recommendations and commended the Panel for their clear, detailed, and enlightening recommendations. As each Panelist left, they were presented with a framed certificate from The Ottawa Hospital in recognition of their commitment and hard work.
Joint Session: Saturday April 9, 2011
One month after the Panel process began, the final joint session of staff, physicians and Panellists (over 90 people) was held at The Ottawa Hospital. 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. After a welcome, 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 108 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.
Over the lunch break, the patients and family members departed, leaving the shortlist of recommendations the physicians and staff would use in the afternoon.
After lunch, the groups were reorganized into five large tables, each devoted to one phase of care, with one table for the Wild Card 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 surface (covered with paper) was divided into 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. The presentations were 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 advice for each of their chosen recommendations. For each recommendation on the Convinced side of the spectrum, the groups advised the next steps to be taken in the second phase of the Transformation Project. For those recommendations the group assigned to the Not Convinced side of the spectrum, participants were asked to provide the rationale for their decision.
In a final plenary, each table took a few minutes to present 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 achievable and necessary.
In the concluding discussion, the room expressed cautious optimism for the next stages of the Transformation Project.
Ultimately, the panel put forward 108 recommendations categorized according to the four stages of care. The 108 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 108 recommendations there were many common themes, including:
- Improving System Navigation
- Enhancing Communication and Information
- Addressing Financial Pressures
- Adopting a Whole-Patient Approach to Health
- Increasing Patient Participation
- Building Relationships
Details for each theme, and the complete list of 108 recommendations can be found in the Final Report (http://www.ottawahospital.on.ca/wps/wcm/connect/4dc1a2804b25b2048eefdf1faf30e8c1/TOH_Stakeholder+Engagement_Final_Eng.pdf?MOD=AJPERES )
Influence, Outcomes, and Effects
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Analysis and Lessons Learned
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Citizens Reference Panel