meetni g with patients - toronto central lhin

In Collaboration with

Meeting with Patients:

Their experiences and perspectives

Patient Destiny – Meeting with Patients • 1

Table of Contents

Acknowledgements 1

Introduction 1

Co-host Remarks 2

Discussions 3

Patient Engagement 3

Communications 3

Caregiver role 4

Incentives for change 5

CASE STUDY: Maria 5

CASE STUDY: Janet 7

Understanding and Sharing Information 8

The web and social media 8

People want different levels of involvement and information 8

Patient records 9

CASE STUDY: Judy 10

Access and Quality 12

Navigation 12

Alternatives for non-emergency care 12

Right Care, in the Right Place, at the Right Time 13

CASE STUDY: ‘Y’ the caregiver 14

CASE STUDY: Patient ‘N’ 15

CASE STUDY: Erella 16

Appendix 1 19

Themes 19

Patient Engagement 19

Understanding and Sharing Information 21

Access and Quality 23

Meeting with Patients: Their experiences and perspectives

AcknowledgementsPatient Destiny prepared this report summarizing the findings of the December 7th ‘Meeting with Patients’ in collaboration with the Toronto Central LHIN. In January, Patient Destiny sent an initial report to meeting participants which provided a complete account of their comments and input.

The success of the meeting was due in large part to the excellent planning and organizational skills and the hard work of staff from both host organizations. We thank the patients and caregivers who gave so generously of their time to attend and to share their first hand experiences and viewpoints throughout the session.

A special thank you to the six participants who agreed to be interviewed for this report and to Erella Ganon for allowing us to use her excellent artwork to illustrate it.

IntroductionThe most important people in the healthcare system are patients and others who use health services. While you will not find many who would disagree with this statement, the healthcare system has not been effective at either supporting people to be partners in their own care or at involving individuals and communities in decisions about the health system or how services are arranged and delivered.

The Toronto Central (TC) LHIN1 is the organization that plans, manages and integrates services within a local health system to meet the needs of patients and communities. Patient Destiny (www.patientdestiny.com) is a patient-led group that advocates and supports patients to become

1 The Toronto Central LHIN funds 174 health service providers that provide a variety of services, including a community care access centre, community health centres, community support services, hospitals, long-term care homes and mental health and addiction services.

better informed partners in their healthcare. The two organizations have created a partnership to enhance patient and caregiver engagement in healthcare in Toronto.

The Toronto Central Local Health Integration Network (TC LHIN) and Patient Destiny co-hosted a ‘Meeting with Patients’ on Wednesday, December 7, 2011 at the University Health Network Centre for Global eHealth Innovation.

Patients, clients and caregivers who receive health services in the Toronto Central LHIN2 were invited to share personal healthcare experiences and to offer ideas and suggestions for improvements and change. The goal was to gather information, insights and advice from those who use the healthcare system to inform planning and decision-making at the local level.

A group of 40 participants took part in this half-day meeting – large enough to ensure a good cross-section of ages and backgrounds and small enough to encourage full participation. In addition, participants were diverse in terms of the health concerns and experiences in the healthcare system.

2 To view a map of the TC LHIN boundaries, got to the LHIN website: http://www.torontocentrallhin.on.ca/Page.aspx?id=50&ekmensel=e2f22c9a_72_184_50_2

2 • Patient Destiny – Meeting with Patients Patient Destiny – Meeting with Patients • 3

However, what all participants had in common was that they are relatively well-informed about their own health or that of the person in their care and all were interested and motivated in sharing their perspectives in order to contribute to positive change in the healthcare system. A number of participants were also quite knowledgeable about the health system and health policy. In these respects, the group did not reflect all patients, clients and caregivers, but rather represented an important segment of individuals distinguished by their knowledge and desire to be full partners in their healthcare.

The session was structured to examine the following topics: information and communications needs; the use of information technology; transitions of care; and managing chronic and other complex conditions.

The TC LHIN will consider the report on the session in its planning and decision making including the strategic priorities for the local healthcare system and for initiatives related to specific patient groups and health problems.

The TC LHIN will also share the report with health service providers including hospitals, community agencies, long-term care homes and the CCAC as well as various other stakeholders so they can consider these important insights as they plan services and programs in their communities.

Co-host RemarksJanine Hopkins, Senior Director, Community Engagement and Corporate Affairs, TC LHIN, welcomed participants and provided an overview of the goals and agenda for the day. She remarked

that the role of the TC LHIN is to get everyone involved in the local healthcare scene working together as a ‘system’ for the benefit of patients. As the system strives to become more person-centred the engagement of the patient is ever more vital. Janine also emphasized that quality is a primary objective and that quality healthcare is also less costly than poor healthcare. For the LHIN a key measure of quality is the patient’s experience.

Janine explained that this session is part of an ongoing process to involve patients and the public. The ideas and advice provided at the session will be considered in relation to specific initiatives including:

• The TC LHIN’s Strategic Plan for the local health system;

• The development and adoption of electronic medical records, telemedicine and other health information innovations;

• Initiatives to improve the management of chronic and complex diseases including mental health and/or addictions;

• Strengthening primary care services.

Kevin Leonard, Founder/Executive Director, Patient Destiny, and a patient with Crohn’s disease, stated the overriding purpose of the organization is to bring more patients into the decision-making process surrounding their own individual care. Patient Destiny advocates for patient access to their health information to allow them to work in partnership with health providers and believes this participation will lead to quicker implementation of care action items, enrichment of the care process and, ultimately, better health outcomes for all patients.

Patient Destiny continues to play a leading role in advancing and promoting information technology to improve the quality of healthcare and the ability of patients to be engaged, enabled, equipped and empowered to be partners in their care. He described Patient Destiny’s two-day “Patients as Partners in their Healthcare” Fall Conference and

Workshop in November 2011 and underlined the value of including patients, along with providers, at all levels of the healthcare system. Too often patients are regarded as the “end product” of the system, rather than as partners with providers in setting healthcare policy, informing strategy, and evaluating performance and outcomes of healthcare delivery plans.

DiscussionsDiscussions throughout all sessions were articulate, enthusiastic, animated, personal and, at times, devastatingly honest. Participants talked about their experiences as patients and caregivers – both good and bad. They described their fears and anxieties, and shared their pain, confusion, gratitude and hope. Most of all, they offered inspiration and concrete ideas that will help us achieve a better care experience for all.

In distilling the conversations of the day a number of common threads and themes emerged that we tracked and present in this overview of discussion highlights. Comments are categorized under three main headings: Patient Engagement; Understanding and Sharing Information; and Access and Quality.

(A detailed transcript of the comments and a description of the structure for discussions are included in Appendix 1.)

Patient EngagementCommunications

Patient/provider communication is viewed as central to engaging patients as partners in their own healthcare. At the same time, it is also seen as a major source of frustration and, at times, can even create a barrier to effective interaction.

Many patients regard many healthcare professionals – physicians in particular - as poor communicators.

Patients want health professionals to take the time to talk to them – in language they can understand. Effective communication can address the unknown and reduce heightened stress during a period of vulnerability.

Communication is a two-way street. Providers need to realize patients may not feel comfortable admitting they do not understand the information just explained. Patients must recognize they do have power as well as a responsibility to improving its effectiveness by examining and upgrading their own skills.

Sporadic appointments and a keen awareness of time constraints often create anxiety among patients and are not conducive to constructive communication. Physicians do not spend enough time with patients.

Individuals with complex conditions, in particular, state they often feel too rushed to ask questions during a short appointment and would like to have an easy way to contact their physicians.


To obtain health information and updates, the time has come to be able to receive them over the phone, by email or by checking online where electronic records are in place. This requires a change in the compensation structure in the current physician fee-for-service model.

In looking for ways to improve patient/provider communication, it was noted that good communication with patients is a teachable skill and courses should be an important part of health professional education.

Equally important, patients need to look at their own ability to clearly articulate questions and concerns and to communicate in an appropriate and effective manner.

There is value in preparing for a visit with a healthcare provider by having all your questions written out. Not only will this save time, but also it may increase the willingness of the provider to respond to concerns.

Caregiver role

Providers also need to recognize the vital role played by caregivers and family (whether related or chosen) and how important it is to include them in communication with the patient. They are an essential part of the individual’s support team and know the patient better than the provider does. Why not take advantage of this knowledge?

There is still a ‘doctor knows best’ mentality that patients and caregivers believe needs to change in order for there to be a true partnership between providers and their patients. There is a culture of paternalism that is part of the system that results in a power imbalance between patient and provider.

The system is not designed to encourage patients as partners. However, with the increasing focus

“ In the end, it’s me that needs to take care of my health. Diabetes self-management is the key. I see a specialist one day a year – the other 364 days it’s my disease and I need to take ownership.”

on patient-centred care in health professional education there is a shift underway. Some participants noted that younger/newer practitioners tend to be more open to patient involvement and health information sharing.

Patients want to be able to have influence over the course of their care. When necessary, patients and families must be persistent in challenging the system when satisfactory answers and explanations are not forthcoming.

Incentives for change

Waiting two hours for an appointment only to be told that all your blood work is normal was described as a “huge waste of time and money” and health provider resources. On the other hand, it was recognized that scheduling this follow-up appointment is a practice expected in a fee-for-service environment. Economic incentives need to change and should be based on patient

MariaA native of Central America, Maria came to Canada with her husband and three children 24 years ago. They settled in Winnipeg for eight years, moved to Ottawa for close to 12 years and have now been in Toronto for the past five years.

“My health records didn’t follow me with my moves so I had to start all over again in each city. I have had Type 2 diabetes for the past 35 years and have high blood pressure as well. Three years ago I experienced two mini strokes (TIAs) within a two-year period.”

“I got a family physician in Toronto who is an older man (probably past retirement age) and he makes referrals to specialists in his own age group who sometimes don’t seem to be up-to-date in terms of the equipment and technology they are using. In addition, many of them are cutting back on office hours in anticipation of retirement and have such a narrow window of availability that it’s very difficult to get an appointment.”

“He’s a good doctor, but he gives me the

impression he’s sexist because of the way he interacts with me. He has a better rapport with my husband. He has trouble communicating with me and things go better when my husband accompanies me to an appointment. Then he addresses all comments to my husband.”

“He is judgmental about my diabetes and makes remarks about me not losing weight. At first this made me feel guilty- then it motivated me to learn more about all the factors that influence physical well-being when you have this disease. While insulin makes it more difficult to lose weight, this is only one aspect in a complex range of physical effects.“

“Since I wasn’t getting my questions answered and I wanted to be more involved in my own care I went searching on the internet and asked my GP for a referral to another specialist. He was very “put out” that I wanted to see someone else.”

“I later connected with an endocrinologist and a diabetic nurse and was encouraged to ask questions. They asked my doctor to transfer me to the diabetes program at Women’s College Hospital. My doctor made the transfer but he was very upset and yelled at me.”

Patient Perspective: Maria

satisfaction. Physicians should be rewarded for educating people to take ownership of their health.

There is recognition of the fact that what is in the patient record may be different from how the patient experienced their care. A question arose about whether there is consistency in how providers record information on patient charts and what kind of training is provided to teach this critical skill.

Continued...


“Providers need to listen to the patient – we know ourselves best.”

“I ask for copies of all my tests so I can compare results over time. And I want to see the notes my doctor writes – opinions and judgmental statements can bias the outlook of a new care provider.”

“I think many physicians would benefit from a seminar on compassion and getting to know your patient.”

“I’m finding providers are more responsive now. There’s more of a patient/physician partnership and I like it much better. We both bring something of value to the partnership.“

“I have a voice now because I’ve educated myself on my health and conditions. I’m intelligent, educated, and engaged in my health!”

“Harnessing the energy and expertise of patients in initiatives such as “Community Ambassadors” is a huge resource that would benefit the healthcare system.”

Maria’s Observations

“However, it was a good move. I have worked hard to educate myself about all aspects of my health, particularly my diabetes. I believe patients have to know all about their conditions and be familiar with all their medications – what each is for, how much is to be taken and when, as well as contraindications and side effects.”

“And I strongly believe patients should have access to their health records.”

“I’ve had a good experience with Women’s Health in Women’s Hands: it’s a multiethnic program and I volunteer there. I give my time and energy and I get back in terms of ongoing education. I’m now part of a pilot support group for people living with diabetes and depression organized jointly by Women’s College Hospital and Women’s Health in Women’s Hands.”

“We are community ambassadors involved with specific ethnic communities. We’re trained to do presentations on diabetes and associated conditions. The audience is encouraged to ask questions which we record and take back to the experts at the clinic. They, in turn, respond to the questioners by email.”

“Being involved and engaged has worked well for me.”

“I fear being in hospital. Previous experience has shown me that nurses are not trained sufficiently in dealing with diabetic patients. Improper use or neglect of insulin can be deadly. Following surgery in Winnipeg, the nurse brought my insulin too early and I had a hypoglycemic episode.”

...continued from previous page

JanetJanet, divorced and living alone, began her journey into the healthcare system on December 10, 2010 when she found a lump in her breast. She went to a walk-in clinic and was referred for an ultrasound and then a mammogram.

“The technician who did the mammogram was not very skilled and the procedure caused me a great deal of pain. Not an auspicious beginning! I was referred to a surgeon and, after various follow up tests, I anxiously awaited the results of the eventual biopsy.”

“The Thursday before Good Friday, I learned that the surgeon’s office was closed until the following Tuesday, so I went to the hospital that had done the biopsy. The Records Department informed me that the results were in my file, but they could not give them to me - only to my doctor. I was so upset at having to wait until after the long weekend, that the Records Manager took pity on me and gave me the results. It was cancer.”

Janet wasn’t sure what came next so she called Women’s College Hospital, where an appointment with a surgeon was scheduled for her on Easter Monday.

“The surgery went well and it was all good news after, until I was sent to Princess Margaret Hospital and found out I needed to follow up with chemo and radiation. My experience with the oncology department was terrible: I felt I was looked at as a piece of material to be handled and processed, rather than a person. On the other hand, my experience with the radiation staff was good.”

“When it came to preparing for chemo, the oncologist was poor at communicating and responding to my concerns. I had stomach trouble and had been warned that taking steroids could lead to ulcers, but the doctor refused to discuss alternatives with me. I asked about medical marijuana, but he refused to discuss it with me.”

“I felt any semblance of choice or having a say in my treatment was taken away.”

After researching and reading all she could about her condition and types of treatment on the internet, Janet was frustrated she was unable to get answers from her doctor.

“I did find a website for patients called ‘Facing Cancer Together’ and it helped me a lot.”

“After my third chemo treatment, I found lumps under my left arm and I wanted to see my oncologist before my next treatment. When I called his office, I was told they could not schedule an appointment, but that I had to go through the triage nurse. When I did, the first thing she told me was that the lumps were nothing to worry about because they were on the left side and my cancer had been on the right. I sensed the first response from most departments I approached with a concern was to say anything to shut me up and make me go away.”

“I persuaded the triage nurse that I should see the doctor, only to be told she was also unable to make an appointment for me because she did not have the doctor’s schedule. The best she could do was email the doctor. PMH has no procedure that permits a patient to phone and make an appointment with his/her oncologist.”

Used with permission and under license from Erella Ganon©2012, all rights reserved.

Patient Perspective: Maria Patient Perspective: Janet


“More and better communication would have helped a lot. I didn’t feel I was getting the truth and would have appreciated more honesty.”

“The humanity was missing in the system: the experience was not at all what I expected. I believe that my medical oncologist was probably an excellent scientist, but, in my opinion, he was a terrible doctor - much like Dr. House on the TV show.”

Understanding and Sharing InformationThe web and social media

Technology and social media have changed the landscape of a patient’s ability to gain healthcare knowledge and to manage their care. This is shifting the power balance between patient and health professional. Patients regularly access the internet to learn more about their symptoms and conditions in an effort to take more control of their health. They access online patient support groups. And in some instances, patients can also access their own health information.

While the internet has opened doors for patients to access information and given patients more power to investigate issues, there is a risk involved because not all the information is accurate.

Patients note that it would be beneficial if healthcare providers could develop guidelines for legitimate and reliable websites dedicated to health information.

At times, the sheer amount of information can be overwhelming and may even be conflicting, so it is wise to seek verification from your healthcare providers.

One patient commented that “transparency is a vehicle to build trust: having access to your chart and seeing all the changes as indicators go up and down. It’s very interesting reading – it’s all about you.”

Another comment, “I stole a glance at my file” reveals a mindset that patients’ health information belongs to providers.

Patients are asking for trust and respect in their capacity to view and handle their health information: one patient with a chronic condition recounted a positive experience where the physician asked: “Have I answered all your questions, do you need any further information?”

“I wish there was less fear about patients having information. There should be more emphasis on ‘I am investing time in you and I want to see progress in these areas.’”

Patient records

For those able to access their own health information, seeing a report and digesting the information in advance better prepared them for their appointment. Ability to review and check accuracy was also appreciated.

Questions about an electronic health record included: Is it safe? Will others who do not need access be able to see it? Can it be hacked? People

One patient commented that “transparency is a vehicle to build trust: having access to your chart and seeing all the changes as indicators go up and down. It’s very interesting reading – it’s all about you.”

“I wish there was less fear about patients having information. There should be more emphasis on ‘I am investing time in you and I want to see progress in these areas.’”

fear what they do not understand and want answers before embracing new technology.

Patients did state they would like electronic access to their personal health record. Hand in hand with access to information, is the need to assist patients in understanding and interpreting their health information: results and personal norms would be defined and there would be functionality to email their physician with questions.

Patients realize that information access is also an issue for providers. With electronic health records in place this will cut down on the need to duplicate tests leading to delay in diagnosis and

Patients come armed with information from the web to their physician appointments to seek verification and validation – almost like “second or third opinions”. In response, some physicians are defensive and not receptive to these discussions while others do encourage and guide online searches.

People want different levels of involvement and information

Access to your own health information assigns a layer of responsibility and management to the patient. It was recognized that this might not be for all patients: many are comfortable with having minimal involvement in decisions about their care; others want to track their health indicators on a regular basis; still others fall somewhere in between. However, it is important that patients, their caregivers and family members have the right to choose the level of involvement that meets their needs and that they are comfortable with.

One person commented “It is important to work with your providers to ensure you’re Googling the right sources.”

Janet’s Observations


treatment and the repeating of one’s case history over and over again. This will also help alleviate the occurrence of these onerous activities in populations with cultural and linguistic barriers.

There was concern expressed about how overwhelming it can be to consider whether or not your information is captured correctly. It was noted that the risk of providers misinterpreting patient information is a particular risk for marginalized populations.

There was a recognition by the patient group that eHealth is a great enabler for the sharing of patient

Judy “My first bout with cancer was three years ago and the treatment that followed was a series of mistakes and mishaps from start to finish. Thyroid surgery did not go well and I spent a month in the hospital - two weeks in ICU. On being discharged, I was given the wrong medications.”

The speaker is Judy, a retired senior who lives alone. Little wonder that she approached treatment after her second cancer diagnosis with some trepidation.

“About 18 months later I was diagnosed with breast cancer. Following my first mammogram in years I got a call from Princess Margaret telling me to come in, that an appointment had been made for me. I knew this had to be bad news and I was right: I had breast cancer.”

“But my experience this time around was like night and day compared to what I’d gone through before. I was connected with a new endocrinologist and received great support at all levels.”

Judy credits the discussion sessions, started by the late oncologist Dr. Robert Buckman, at ELLICSR for allowing patients to be themselves and for restoring their humanity. (ELLICSR is the acronym for Electronic Living Laboratory for Interdisciplinary Cancer Survivorship Research.)

“Through these sessions, now facilitated by a social worker and a nurse, I connected with community-based support groups such as Gilda’s Club and Wellspring where patients share experiences and listen to others in a group therapy setting. And we are able to find strength in sharing and comparing notes. It helps me to reach out to others and share what I’ve learned and listen to their particular

information along the continuum of care. They would like to learn more and suggested a public communication strategy explaining eHealth and its benefits.

Patients recognize that the province needs to move forward on investment in eHealth development: that it is a good initiative to break down barriers, improve care coordination and improve safety of diagnosis and treatment across disciplines, resulting in improved health outcomes for patients. It was noted that the Connecting GTA project will be a major milestone in securely sharing patient health information across the five LHINs in the GTA.

experiences. We’re all travelling along the same road.”

Judy is now looking after herself and taking charge of her health. She takes Tamoxifen and will have to take it for years to come. Mentoring and assisting others helps fight the fatigue that seems to result from having gone through any type of treatment for any type of cancer.”

“We really need a Healthcare Plan, rather than the Health Cure Plan we now have. I’ve heard it said that some at the OECD think that ‘our present healthcare system is a mile wide and an inch deep’ meaning we do a lot, but we don’t do it well enough.”

Continued...


“I think more focus on prevention is required at all levels of society: a prophylactic system. We must get the message out to kids in the schools, giving them the tools to maintain good health and avoid illness.”

“There needs to be more education for healthcare providers, particularly for older physicians who believe they have become big shots and are thus in proximity to The Almighty. They need to see patients as their partners and learn to work with them. One patient recently told me she wasn’t able to talk to her oncologist – now that’s just bad! We must get our questions answered.”

“Patients need to have access to their personal health information so they can play a more active role in their own care.”

“I recently saw a poster listing Patients’ Rights side by side with Patients’ Obligations: this is helpful information and we need to be cognizant of both sides of the coin.”

“At the other end of the spectrum there are times I think some seniors and physicians regard doctor visits as a compensable social activity. We need to respect the time of providers, as we want them to respect ours, if only to avoid bankrupting our health/wellness system.”

“I think we need to look at a different way to pay physicians: maybe it’s time for capitation.”

Judy’s Observations

Patient Perspective: Judy

Patient Perspective: Judy


Access and QualityNavigation

Navigating our healthcare system is not easy at the best of times and can be a formidable challenge for immigrant populations with language issues. The transfer of information from one service to the next or among different providers is not always a smooth process and can be particularly daunting if a patient has language issues.

Patients wish to be educated and provided with reliable objective information to guide them in making decisions about their care. Yet it was reported that some doctors’ waiting rooms have signs asking patients to “limit your issues.”

Successful navigation is particularly essential for patients with multiple conditions. One patient described the experience of undergoing multiple transfers from service to service, information was not shared among physicians and, as a result, there was a disruption in medications. When patients have multiple conditions, they may need help with navigation and case management to maintain a steady health status.

In addition, there needs to be accountability placed on healthcare providers to guard against sharing private information when it’s not relevant to, nor would it impact, immediate care.

The group suggested the need for a healthcare ‘concierge’ or ‘navigator’ to interpret information and explain next steps. This navigator might well be a patient mentor, an individual who is able to pass on the experience of someone who has been through the same situation.

A patient history that includes treatment at a psychiatric facility can result in discrimination.

they require are often not readily available. These patients are too often forced to go to ER to access care, placing an unnecessary burden on emergency staff. There needs to be more alternative venues where they can access non-emergency care.

Patients with chronic diseases also have to go to the ER to access hospital care, even though it is not an emergency situation, but simply an ongoing health condition that at times requires hospitalization. The ER is not the ideal gateway to care when it is not an emergency.

It was also noted that the quality of care is affected by staffing levels: one patient recounted her difficulty in getting her mother scheduled pain medication at 7:00 am on the Saturday of a long weekend because only one nurse was on shift.

It was also noted that patients may be discharged from hospital without a follow-up contact or plan supporting their transition from hospital to the community. If they need to contact the hospital who do they call? The surgeon? The discharge planner?

Cultural and linguistic barriers have resulted in repetitive diagnostic tests when patients were referred to multiple locations. This could have been avoided if the patient had access to a carbon copy or email of his test results. One patient recounted an instance of arriving for an appointment and the nurse was not able to collect or access information, so the patient had to track down his own record, resulting in much aggravation and frustration in accessing care.

Patients want to be involved in discussions of their treatment and to be informed of what alternatives may be available when deciding on a course of therapy. They need someone to listen to their concerns and to feel empowered in making the decisions on what action is to be taken.

Patients wish to be educated and provided with reliable objective information to guide them in making decisions about their care. Yet it was reported that some doctors’ waiting rooms have signs asking patients to “limit your issues.” A patient history that

includes treatment at a psychiatric facility can result in discrimination. “Having a mental health advocate/peer to help navigate the system works well – you’re less likely to be ignored if someone is with you.”

Patients need to be involved in discussions of their treatment and to be informed of what alternatives may be available when deciding on a course of therapy.

Right Care, in the Right Place, at the Right Time

The investment in time spent with a patient is most valuable when given by the right team member, whether it be the physician, nurse practitioner, pharmacist, physiotherapist, dietitian or specialist. This is a vital aspect of education and prevention that may well result in avoiding the need for re-admission to hospital.

“Having a mental health advocate/peer to help navigate the system works well – you’re less likely to be ignored if someone is with you.”

Alternatives for non-emergency care

Patients with mental health or addiction issues may face particular challenges in accessing primary care, as they are often deemed too complex. And the necessary mental health or addiction services


‘Y’ the caregiverY is a caregiver to his father-in-law who is now in his mid 80s.

“We are a close-knit family and he’s like a father to me. My in-laws live near to my home which makes it convenient for my wife and me to be part of their lives.”

“My father-in-law’s health problems began in June of 2009, when he had a fall during the night on his way to the bathroom. Although he brushed the fall aside as an isolated incident, it marked a change in his health status. A few weeks later he was in Paris travelling with his wife when he collapsed and had to be flown back to Toronto.”

“He was diagnosed with a brain tumour and admitted to North York General Hospital where he remained from July to September. We began looking for a long-term care facility for him and, after being on the wait list, he was eventually accepted at Baycrest.“

“During the two years he was a resident, my role as caregiver expanded to include advocacy, not only for my father-in-law’s care, but also for institutional improvements. I joined the Hospital Advisory Council and, along with other members of the council, began to tackle challenges, look for solutions, and initiate improvements that would benefit patients, caregivers, families and even staff. These changes included: some adjustments to nursing, housekeeping and parking lot staffing patterns for better coverage and reduced burnout; expanding the number of nutritional items on the patient menus (e.g. chickpeas); and increasing the choices for families to get refreshments in the hospital – there was only a single location.”

“During this time the hospital was preparing for accreditation so it was an ideal time for the Advisory Council to develop strategies for implementing new approaches. The accreditation process was a great source of motivation.”

Recently, Y and his family moved his father-in-law out of long-term care and back to his home.

“He wasn’t making any further improvements at all and, as a family, we felt his needs would be better met in his own home, with his wife and other family members around. We felt he needed greater sensitivity to his overall care needs, as well as more stimulation and more focus on his mobility. We were paying a lot of money, but not seeing the results we hoped for.”

“In preparation for his homecoming, we embarked on major renovations to my in-laws’ home to ensure it would meet the needs of patient and caregivers alike. Now that he’s home, my father-in-law is happier and my mother-in-law and my wife are far less stressed.”

“The next steps in the process will be to arrange for a complete assessment of his needs and the development of a plan of action to meet them. We will tap into the resources required to help him move forward and have the best possible quality of life.”

In addition to his work on the Hospital Advisory Council and outreach committees, Y is actively involved in a number of other healthcare groups, attending conferences and making presentations. He also promotes greater accessibility to mental health services. Y is committed to improving the healthcare system in any way he can.

Caregiver Perspective: ‘Y’ Patient Perspective: ‘N’

Patient ‘N’Youth is a valued commodity in our society, but when you are on the cusp of turning 18, it can challenge your ability to access the healthcare services you need. You are in that age limbo between pediatric and adult programs and you may find yourself being shunted back and forth between the two.

N has first-hand knowledge of this. She lives away from her family in a sober living facility and goes to school. Just over a year ago she was hospitalized in a psychiatric unit as a result of a bad reaction to medication for depression. When she was discharged a support team and referral to a psychiatrist was supposed to be in place for her, but was not. Problems arose because at 17, her age placed her in the awkward transition between youth and adult. She ended up doing her own legwork to find the support she was looking for.

“During this time I was hospitalized three times as health providers tried to find the right medications to enable me to get on with my life. This was hard on my physical system, as well as my mind. Only recently did I get the needed referral to the psychiatrist and I’m now on the proper meds.”

“Then in June of 2010, I started having a lot of problems with my legs and back. I was in severe pain and frequently collapsed, unable to walk. MRI results showed an arachnoid cyst on my spine, which is uncommon as these are usually found on the brain.”

“The cyst was compressing the sacral roots creating problems with bladder function and was also putting pressure on the spinal nerve

roots, hindering mobility and causing pain. I was in and out of hospital several times and, because I was close to turning 18, Sick Kids didn’t want to perform the surgery.”

“Finally, unable to urinate and in immense discomfort, I went to the ER on a Wednesday and had surgery two days later, followed by a week and a half of bed rest. I was told the surgeons had been unable to remove the cyst due to its sensitive location and were only able to drain it. There is a high chance it will fill again. I also found out I had a form of spina bifida and that the cyst had actually blocked the opening in my spine, thus preventing spinal fluid from leaking out. Surgeons plugged the opening at the base of my spine.”

“The medical team had doubts about whether I’d ever walk again, so I was delighted when sensation to my legs began to return.”

N was discharged with prescriptions for pain medications, but due to a mix-up did not get the necessary approval for coverage of the cost and ended up being sent home after back surgery with Tylenol and ibuprofen to alleviate the blinding pain.

“Once again I had to go back to hospital and this time the providers got their act together and I met with the entire team – surgery, neurosurgery and urology – and was referred to the pain clinic. My meds were finally covered and I received home physiotherapy which got me strong enough that I could get to the clinic.Things are working for me now: I’m being transitioned from pediatric to adult care and my files are being transferred. I’m now getting the range of healthcare services I need on a regular basis and have a designated ER to turn to in an emergency.”


“Doctors need to seriously learn to have a better bedside manner. There’s a serious shortage of proper communication. Every patient has the right to know what’s happening with their own body.”

“The health system needs to be better able to share information across specialties and to ensure accuracy of health records.”

“Health providers shouldn’t make assumptions based on a patient’s past experience: too often a notation of access to psychiatric services raises a red flag and care veers off in a different direction.”

“Services for mental health and addictions have waiting lists that are far too long. This is why so many people end up in crisis centres. When you go for help in these areas your life is dangling in the balance.”

Erella“Artistic,” “creative,” “generous,” “warm-hearted” – these are all words people use when they talk about Erella, who shares a home with her teenage daughter, Celeste. But whatever words they use to describe her, they all agree: she is a fighter.

“I’ve had four brain surgeries and four rounds of post-surgical recovery within the past 14 years and I am on a pharmaceutical merry-go-round to find the right balance of hormones, pain killers and other medications. I’ve had surgery to remove both of my adrenal glands, my gall bladder and had radiation treatments that left me with permanent sores in my mouth.”

“It all began in the Fall of 1997, when I started having severe headaches. I wasn’t getting any answers from the physicians I saw and was referred to an endocrinologist. Now this is an appointment I’ll never forget!”

“The doctor told me I ‘had a large mass at the base of my hypothalamus and it would have to come out.’ Then he left. Confused and rather stunned, I got dressed and went out to the crowded waiting room where the nurse at the desk asked if I wanted to make another appointment.”

“I asked if that would be when my mass would be removed and she replied in a loud voice: ‘You want to have your brain tumour taken out in a clinic?’ That’s the first time I realized I had a brain tumour!”

“I was a wreck waiting for the first surgery and was fortunate my friends rallied around to give me the support I needed.”

“I thought I’d feel better after the surgery, but a follow-up biopsy confirmed I had Cushing’s Disease, a rare condition affecting the pituitary gland and causing a range of symptoms, including persistent pain.”

N’s Observations

Patient Perspective: Erella

Patient Perspective: Erella

“In September of 2007, a new brain tumour was discovered on my jugular vein and I was told that, because of the location, no one would operate to remove it.”

Erella is not one to give up without a fight. She searched the internet and found one surgeon in Canada who could perform this surgery. She contacted him, but was told he was not taking on any new patients. She asked her extensive list of doctors to try to persuade him but he was not being swayed: even worse, his secretary was getting aggravated. Connecting through her international network, Erella managed to find someone to convince him to help her. That saved her life. He wasn’t able to remove the entire brain tumour, but it is a slow-growing tumour and the doctors are keeping an eye on it through 3T MRIs at regular intervals. (3T is a measurement, short for Tesla, most MRIs are only 1 or 1.5 T.)

“This was a very challenging time in my life, as my illness impeded my ability to work and make a living. My house was falling down around me and was not a suitable place to recover from brain surgery. We had garage sales for me to sell my extensive record collection and pay for repairs. And we got a government grant to bring it up to the basic minimums for living and once again, friends and neighbours stepped in to repair the house and take care of my daughter and me.”

“Through all this, I feel I’ve been fortunate in having a ‘Dream Team’ of doctors. I trust them and they can trust me to be accurate and to the point, when we meet. I take my drugs as prescribed and memorize the names and doses of the medication each doctor prescribes. As well, I make sure each doctor knows what the others have prescribed. I make it easy for them to take good care of me.”

Continued...


Used with permission and under license from Erella Ganon©2012, all rights reserved.

Patient Destiny – Meeting with Patients • 1918 • Patient Destiny – Meeting with Patients

“The healthcare system too often looks at people as if they are marionettes, rather than living, feeling individuals.”

“I wish doctors would talk to each other more. Specialists need to communicate with each other regarding the various treatments for different illnesses and conditions in their patients and discuss possible side effects and interactions.”

“I’ve discovered a lot through my own research and have educated my doctors about my rare condition. The best doctors will allow a patient to educate them.”

“Patients should have access to their own health record so they can track test results. Sometimes, a doctor will have me redo tests because it is impossible to get the test results from one doctor to another. It is ridiculous because some of these tests are unpleasant and most of them are expensive for the system.”

“Communicating with our doctors via email would be good. It would free up the system for other patients. Having to make an appointment with a secretary to get a test result wastes a lot of people’s

time and resources. If I could see my test results online, I could make appropriate changes in lifestyle immediately without having to wait to see the doctor.”

“I imagine there’s a danger that some would spoil it by wasting the doctor’s time with trivia. I am an educated patient. If I get some test results or information, I know how to investigate and do my own research. I am sure some patients want doctors to hold their hands and would ask a lot of time-consuming frivolous questions.”

“I want the system to work more efficiently. It will make us healthier and I think it will cost the system less.”

Erella’s observations Appendix 1

Meeting with Patients: December 7, 2011Co-hosted by the Toronto Central Local Health Integration Network

Format for discussion and summary of participant comments

The World Café structure was used as the approach for the day’s discussion. World Café is a creative process that allows open, informal and free-flowing conversation in a café-like setting. Participants sit around small tables covered with tablecloths, enhancing the relaxed ambiance of a small café. Large pads of paper, along with pens and crayons are provided and participants are encouraged to draw and record ideas and comments as they emerge.

At the December 7th ‘Meeting with Patients’ event, eight small tables with five chairs at each were set up around the room. One person at each table, representing the TC LHIN or Patient Destiny, was designated as the recorder/facilitator and each table represented a theme for consideration. There were suggested questions to get discussions underway during each of three 45-minutes sessions with different people joining in. Participants selected the three themes they were most interested in and joined the relevant table at the end of each session.

As participants moved from theme to theme, the table hosts would summarize the previous group’s conversation and the new group could build on that. This allowed discussions to be expanded and ideas to be cross-fertilized as people moved around.

At the end of the three sessions the main ideas discussed were summarized in a plenary session.

People were invited through Patient Destiny’s network and identified by health service provider organizations and TC LHIN partners and advisory groups including the Seniors Panel, Mental Health and Addictions Consumer and Family Panels, the Alzheimer Society of Toronto and the French Language Health Services Planning Entity #3.

Themes

Six general themes were selected for discussion and questions relating to each were developed to stimulate conversation and get the flow of ideas rolling. Themes were: 1) Patient Engagement; 2) Quality; 3) Information; 4) Technology; 5) Understanding and Sharing Information; and 6) Access.

All comments from each session at each table were transcribed in an initial draft of a report on the day’s discussions. Following a review noting repetition and overlap of a number of issues and key points, participant comments were further synthesized under three main themes:1) Patient Engagement; 2) Understanding and Sharing Information; and 3) Access and Quality.

The summary of comments is included below:

Patient Engagement

Information/communication

• Information on the importance of effective communication must be part of the training and education of healthcare professionals.

• Mechanism for patient/caregiver feedback needs to be built into the system at all levels.

• Some participants find health professionals, such as physicians, are poor communicators, adding to patient’s feeling of vulnerability and helplessness.

• Communication is a two-way street between patient and provider – patients have a responsibility to examine and improve their own skills.

• Limited engagement with staff can create anxiety – communication reduces stress.

• Listening and good two-way translation are vital – translation of the information the provider is hearing from the patient and translation of complex information into simple language for the patient.

• Patients want an easy way to be able to ask questions: it is especially difficult for seniors and those with complex conditions and multiple specialist alignments who feel too rushed to ask questions during a short appointment.

• Good communication in person can address the unknown and dispel anxiety – and it is a teachable skill.

• We need to foster better communication between providers and patients and across healthcare professionals.


• It is all about basic skills and human values: on the flip side, patients can be rude as well – what’s needed is common ground for respectful exchange and interaction.

• Not having access to the information you need leaves you in the dark with limited options.

• “Upon discharge I was seen by a new pharmacist who spent 40 minutes with me imparting valuable information on my medications – why I was taking them, what they’re doing to my body and what would happen if I were to stop taking them.”

Relationships/power imbalance

• All providers need to take the time to communicate with patients – language can create barriers if English is not well understood: patient or caregiver may not feel comfortable admitting they don’t understand the information being given.

• The fault lies in the culture of paternalism throughout the system – it is not just individual physicians who are at fault.

• Equality is lacking between patient and physician/health system.

• Patients do have power and they have to recognize this and step up and take it.

• “There should be a course offered on how to speak to your doctor: be prepared, get your notes out – it’s sometimes hard to get the doctor to listen to your concerns.”

• There is still a “doctor knows best” mentality and the dynamic between patient and physician needs to change.

• A very positive experience was reported by a patient with a chronic condition: Physician asks: “Have I answered all your questions, do you need any further information?” He told her he would be sure the information would be sent to her GP and that copies would be mailed to her.

• Healthcare providers are providing a service and patients need to know how to express their concerns. Is there a return policy? Where do they register complaints or get more information? Is there an ombudsman? Or a place online where you can complain?

• There is a definite issue with the fee-for-service structure: physicians do not spend enough time with each patient and this can have an adverse affect on seniors with multiple issues

• Economic incentive should be based on patient satisfaction. There is growing recognition of the

limitations of the way the system is funded. We need to devolve the authority so the LHINs can allocate funds based on performance and user satisfaction.

• “I like to be prepared for the visit with my doctor and have all my questions typed out in advance. The doctor may not have time to deal with everything and I may require a second appointment.”

• Information is controlled by providers who charge you for access: they will not share or interpret all the information for you, but tell you only what they want you to know.

• Large groups of patients trust and accept what the physician says and do not ask questions.

• “Sign in waiting room says ‘limit your issues’” – I will say what I want to say – you need to establish a consultative relationship and this is not always an easy task.”

• “Physicians bill for their services and you are limited to “one claim” per appointment. If you have another issue, make another appointment. This is not patient-centred.”

• “’Stole a glance at my file’ reveals the prevalent mentality that our health information belongs to providers – even such a common item as our blood pressure reading.”

• Idea: Before the appointment, ask patient to read, record and come prepared to discuss specific complex issues. There needs to be trust and respect for the patient’s capacity to handle the information and to deal with any risks in having it. People want to influence their own care but physicians want to have control.

• Maintaining a good relationship with health professionals/physicians goes a long way – especially with the receptionist.

Patients/caregivers as partners in care: encouragement and preparation

• System is not designed to encourage patients as partners.

• Families/patients must be persistent in challenging system when satisfactory answers/explanations are not forthcoming.

• Social media will force change in how the system functions – more patients will have more information about their illnesses and conditions.

• Relay medical information in layman terms to ensure patient feedback. Patient access to information should be provided.

• Find a way for patients to access their medical records, to log-in and be able to consult/discuss with treating physician. Send clinical information to patient as is; if needed the patient will search internet or see a physician

to understand: encryption of medical records – if we can bank/trade stocks online, we should be able to access medical records safely.

• Younger physicians are more open to patient involvement: “My doctor uses a computer and I was able to sign up with a computer program that is interactive. USB with records allows me to have my information and allows it to be shared with providers.”

• Patient engagement is talked about but not practiced. There’s a pamphlet titled “It’s your health: Be involved,” but when you ask, your involvement is discouraged.

• Providers need to acknowledge the role of family members and caregivers who are assisting patients.

• Significant others, family, close friends need to be included as part of patient’s support system and providers need to liaise with caregivers.

• Family members know the patient better than the physician, so why not take advantage of that knowledge?

• Not everyone wants to be an active partner in their care – it is not for all patients and families: some find it too emotionally draining; others find too time-consuming.

• Access to your own information assigns a layer of responsibility and management to yourself.

• Patients need to choose the level of responsibility they are willing to take on: sometimes you just want to rely on the specialists/provider.

• “In the end, it’s me that needs to take care of my health. Diabetes self-management is the key. I see a specialist one day a year – the other 364 days it’s my disease and I need to take ownership.”

• So many patients are unaware of their own healthcare. There needs to be a lot of emphasis on educating patients and getting them to take ownership of their health.

• Better communication between services with patient interaction all the way.

• Quality information has to be there for patients/caregivers to be empowered – there can be difficulty understanding results because personal “norms” vary.

• “New physician now turns on the computer so we can go over results with him and he can tell me what’s good or bad.”

• You may have to take it upon yourself to consolidate information (i.e. medications) so the caregiver has it in the event of an emergency: there should be a simple technological solution for this.

• Patients need to take ownership of their issues – invest in patient education and patient support groups.

• Quality information has to be there for patients/

caregivers to be empowered – there can be difficulty understanding results because personal “norms” vary.

Understanding and Sharing Information

Technology for Patient Records

• It is important to have direct access to health information in a care setting and that health professionals help patients understand the information.

• The patient record is different from the patient experience: is there a consistency in how providers record information in the patient charts? This is a skill and an art: what kind of training is provided?

• eHealth technologies need money to be developed: we need to look at the big picture and see the possibility of great achievement. Ontario is lagging behind – we need to ignore the media frenzy and any political motives against eHealth and continue to move forward. eHealth is a good initiative to break down barriers, improve safety of diagnosis and treatment, resulting in better outcomes for patients.

• Questions about electronic health records include: is it safe? Will other people who don’t need access see it? Can it be hacked? When you use system to access information you need to log out – lots of practical aspects (Some members of the discussion group expressed concerns about security of their information and would want to be convinced it’s safe.)

• Patients would like to have electronic access to their personal health record, but they would need education/guidance in understanding information.

• Technology should be designed to show results and help you define the meaning of the results at the same time: it should also enable you to ask questions electronically.

• It can be overwhelming to consider whether or not your information is captured correctly: information from providers can be misinterpreted if patients cannot review it – and this can be a risk especially for marginalized populations.

• Need more public education and a broader communication plan on what eHealth means, what its benefits are, how personal privacy is safeguarded – people fear what they do not understand.

• IT (eHealth) is a great enabler for physicians and patients throughout the continuum of care…”transparency is a vehicle to build trust: having access to your chart and seeing all the changes as indicators go up and down. It’s very interesting reading – it’s all about you.”


• “People are too often treated in isolation, but with one record everyone would see the same documentation – having to repeat yourself over and over gives you the sense people don’t care and aren’t hearing you.”

• Lab tests should be available online so patient does not have to wait for another appointment with the physician – this would also free the physician to see someone else.

• “If we had better communication and access to records, physicians would have more time.”

• “Health record is important to people – it represents my ‘whole’ self.”

• Do physicians read information before appointment? With patient access, patient can come more prepared.

Using the Internet

• Providers and patients need to work in partnership so patients are not left on their own to interpret a barrage of information available on the Internet.

• Internet has opened the doors to accessing information and patient has more power to investigate issues – this can be risky because the information may be inaccurate.

• Online information is a great tool for advocacy.• Patients use the internet as a second opinion – “I have

used it as an educational tool and been better able to question my doctor and get the response I needed.”

• Value in social media networking: online patient support groups provide information and a source of connection around the world; Facebook offers resource for discussion with other patients; organizational sites offer forums, blogs and case studies; can also access information through Twitter.

• Internet can also be a source of information for loved ones.

• Newly-diagnosed patients need more information. Found that for rare conditions, searches are unsatisfying.

• Physicians and other health professionals are generally not receptive to shared findings that patients bring from websites – they become defensive. This attitude might be addressed with the implementation of recognized legitimate/reliable sites.

• On the other hand, some health professionals do encourage looking up information online.

• When wishing to ask physician about information learned from websites, important to get physician onside as you seek their answers and advice. Suggested tact: “I’ve heard…, I read…”

Guidance to reliable resources of web-based information

• “It is important to work with your physicians to ensure you’re Googling the right sources.”

• People will use the Internet to help interpret information – it’s important they know which sources are reliable.

• Patients do Google searches for health information – trying to take more control of their health.

• Patients search for symptoms to become informed and to share with physicians when seeking their input and judgment. They need help to search for reputable sources.

• Information from websites can also provide options and alternatives, and can act as “second and third opinion” for review with physician. Patients are empowering themselves to better manage their care.

• Sometimes there is too much information which can be overwhelming and, at times, conflicting. Need to verify with healthcare provider.

Sharing personal health information across providers

• “Doctors and nurses are constrained in system with rules around privacy/sharing information – I wish there was less fear about patients having information. There should be more emphasis on ‘I am investing time in you and I want to see progress in these areas.’”

• Patient information should be in one place (medication/test results). This would avoid need to repeat information to all providers: Connecting GTA is the solution and there needs to be a clear communication strategy about this initiative for the public.

• “I moved from Winnipeg to Ottawa to Toronto – since my health record didn’t go with me there was no history of my diabetes, high blood pressure, surgeries, etc.- this information may have helped me avoid a series of mini strokes. I had to repeat my information between hospitals even though they were across the road from each other.”

• “Part of the process is educating health professionals. Concern would be to find something in my record I haven’t been told about. I want to have this information before I talk to my specialist at my next appointment.”

• Patient was charged to transfer information from one area to another – “Physicians/system think it’s their file. We are just commodities – the embodiments of symptoms.”

• “My doctor, nurse, endocrinologist and dietitian shared my record and tests results and talked to me about what the information meant.”

• Sharing information across providers might improve the overall quality of information and make all parties more accountable.

• Remote locations also need access to information.• Smart devices are becoming powerful tools for health

information sharing. • Information access is also an issue across healthcare

providers.

Access and Quality

Navigating the system/Cultural barriers

• Many need help to navigate the system and to have someone explain what decisions need to be made, what’s the next step and where to go for care/help.

• The transfer of information from one service to the next or among different providers can be challenging particularly for immigrant populations – too often the onus is on the patient to continually re-explain information.

• “I don’t remember information from one appointment to the next and may not take notes – how much more difficult this is for those who don’t have a good grasp of English – my mom’s ability is very limited.”

• Language issues would be a major hurdle for some immigrant populations.

• Cultural and linguistic barriers have resulted in repetitive diagnostics, useless tests and sometimes missed diagnosis (broken foot) leading to increased costs and risks. Poor healthcare = Costly healthcare.

• In a city as diverse as Toronto, language can be a formidable barrier to access. For example there are areas of the city where 70% of the population speak Hindi-Urdu, especially the seniors.

• Accountability should be placed on physicians and other healthcare providers to guard against sharing private information when it’s not relevant to, nor would it impact, immediate care. History with psychiatric facility results in discrimination.

• Cultural barriers – patient with broken foot sent home after being diagnosed as OK without an X-ray and no proper treatment. Best Practice would have entailed patient getting carbon copy/email of test results. (For email, how soon can this happen? How many physicians have switched to electronic records?)

• Cultural differences can cause problems: husband of patient from France was sick when he arrived in Canada. “He needed medication but didn’t know he should have gone to a hospital: he tried to visit a doctor – English wasn’t good enough to explain needs – he was turned away very rudely.”

• When leaving hospital patients/caregivers often unclear on how to manage future care. They don’t know who to call if they need to call the hospital back – the discharge planner, the surgeon?

• Nurse was not able to collect or access information: patient had to track down his own record, leading to a level of aggravation as patient too tired to deal with access to care.

Connecting with the services you need

• “We don’t have universal access – dental care, drugs, wheelchairs and other assistive aides are not always covered and you also have to seek out physiotherapists, psychiatrists etc. who are covered by OHIP.”

• People with addiction and mental health issues go to ER in large numbers: there should be another venue where they can seek non-emergency medical care.

• “You have to access the hospital via the ER. This isn’t the best route when you have a chronic disease: Why can’t you bypass ER to get to hospital?”

• “It’s hard to access care when no one will return calls.”• Mental health patient with complex conditions followed

by a primary physician had trouble getting appointments with specialists. Ended up by lying to get to ER.

• “Underwent multiple transfers from service to service – information was not shared among physicians and as a result, there was a disruption in my medications.”

• When there are multiple conditions, need help with navigation and case management to remain steady.

• Shortage of staff on weekends: “my mother was due for pain medication at 7 am Saturday of a long weekend. Only one nurse was there – no doctors – and the caregiver ended up helping the nurse.”

• There is discrimination against mental health patients when accessing primary care – they are deemed “too complex.”

• Breast cancer patient followed by primary care and specialist and required to move from hospital to hospital. Often repeat case history and deal with different residents in the teaching hospitals. Frustrated as expect clinicians to know why admitted.

24 • Patient Destiny – Meeting with Patients

• Also, language used in the record would have to be at a level that most could understand – you need to know your population and the general level of education.

• We need to be given treatment choices, including end-of-life care, along with suggestions of what would work best.

• Patients should be told about available treatment alternatives.

• The investment in time is most valuable when given by the right team members (i.e. pharmacist, physiotherapist, dietitian) – this is an important step in education and prevention and can result in avoiding re-admission.

Value of Advocate/Mentor

• You need a healthcare concierge/navigator to interpret information and next steps.

• “Having a mental health advocate/peer to help navigate the system works well – you’re less likely to be ignored if someone is with you.”

• “I like the idea of giving physicians incentives for educating people and getting them to take ownership of their health. Need to start this at a young age and use role models and mentors regarding health – make use of the experience of people who’ve been through the same situation.”

Connecting with Providers through email and phone

• “Want to be able to ask the physician questions over the phone or by email, but fee codes are a barrier: example of waiting almost two hours for a pre-scheduled appointment for the physician to say everything was fine – this is a huge waste of time and money when the information could have been conveyed by phone, email or by notation on an electronic file.”

• Fee codes for phone calls and email seem to be a major barrier to advancing the sharing of information between providers and patients.

• Important to be able to email physician with critical information.

• Physician asked for input through email and then responded using his blackberry within an hour – because of life and death situation.

In Collaboration with

meetni g with patients - toronto central lhin

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