Exploring Patient and Caregiver Perspectives on Integration in the Ontario Health-care System

48
Exploring Patient and Caregiver Perspectives on Integration in the Ontario Health- care System Research conducted by Pollara Inc. The Change Foundation June 2008

description

Exploring Patient and Caregiver Perspectives on Integration in the Ontario Health-care System. Research conducted by Pollara Inc. The Change Foundation June 2008. Notes. This is an edited version of the report referenced in “ Who is the Puzzle maker?: - PowerPoint PPT Presentation

Transcript of Exploring Patient and Caregiver Perspectives on Integration in the Ontario Health-care System

Page 1: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Exploring Patient and Caregiver Perspectives

on Integration in the Ontario Health-care System

Research conducted by Pollara Inc.

The Change Foundation

June 2008

Page 2: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

NotesThis is an edited version of the report referenced in “Who is the Puzzle maker?:

Patient/caregiver Perspectives on Navigating Health Services in Ontario” , The Change Foundation Health Integration Report, June 2008.

Reference to data on page 10, 81 can be found on page 45 in this version;

Reference to data on page 9, 77 can be found on page 41 in this version;

Reference to data on page 79 can be found on page 43 in this version; and

Reference to data on page 73 can be found on page 37 in this version.

Page 3: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Objectives

Specific objectives:

→ Explore what patients and caregivers value and dislike about their experiences with the current system;

→ Find out what patients and caregivers recommend to ease navigation through the system;

→ Generate ideas about what indicators best capture integration from a patient perspective.

The purpose of this research project was to obtain patient and caregiver experiences and views of integration in Ontario’s health-care system.

Page 4: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Context

→ The Change Foundation issued an RFP and contracted Pollara Inc. to conduct focus groups with patients and caregivers of patients who are high users of the health system.

→ Pollara Inc. allowed The Change Foundation to include additional questions to their on-line Ontario general population surveys.

The following presentation summarizes the key findings and analysis of the:

Focus Groups of Patients and Caregivers

General Population Survey

Page 5: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

A. Focus Groups of Patients and Caregivers

Page 6: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Methodology – Qualitative Phase

A total of ten 90-minute focus groups were held across Ontario between March 26 th and April 9th, 2008 with 100 patients and caregivers:

Toronto (2 patient groups);

Ottawa (2 patient groups);

Kingston (1 patient and 1 caregiver group);

Sudbury (1 patient and 1 caregiver French language groups);

Ingersoll (1 patient and 1 caregiver group).

The above locations were chosen in order to represent Ontario’s large metropolitan areas (Toronto and Ottawa), a smaller community with a teaching hospital (Kingston), a small community with no teaching hospital (Ingersoll), and a Francophone community (Sudbury).

Page 7: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Methodology – Qualitative Phase (Cont’d)

Patients were men and women aged 18 or older (within the past 12 months) with a minimum of 6 interactions with the health-care system, including at least one interaction involving a provider or service besides a family doctor and specialist.

Caregivers were men and women aged 18 or older who had accompanied a friend or family member (who met the above criteria) to medical appointments and felt that they could speak to this person’s experiences with the system.

Page 8: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Key Findings and Analysis:Qualitative

Page 9: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Collaboration Between Health-care ProvidersFew patient participants were treated by an organized, multi-disciplinary health team and therefore,

had difficulty distinguishing collaboration from communication between their various health-care providers:

“In my experience, I must say, the communication between my GP and my family grouping and the specialist has been very good.”

“Well, my GP refers a specialist with whom he already as a good relationship. So when there is an issue he’s in regular contact with those specialists where, you know, as appropriate. So the information is two way and I think that’s an effective system. And it’s unfortunate for those of you who don’t have GPs who have those established relationships.”

“…I would say that all of my doctors, and I’ve got an awful lot of them, they’re all about the same age and they all went to school together. I never wait for CT scans or MRIs…So I think maybe that I have latched into a good network.”

Patient participants whose family doctor works at a community health clinic or as part of a multi-disciplinary health team report greater collaboration between their health-care providers.

Page 10: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Consistency of Health-care Providers Patient and caregiver participants expressed a preference for consistency and reported few

problems maintaining long-term relationships with their health-care providers except during in-patient hospital stays.

“I think it’s extremely important to establish an ongoing relationship with your family doctor…When you’re sick, you’ll see anybody, let’s be honest, right?…but on a regular basis you want to see someone who has a vested interest in you as a person and the only way you’re gonna do that is to establish an ongoing relationship with the doctor. In my case, I’m fortunate to have a family doctor in a highly automated clinic. Records are there at the click of a mouse button.”

Both in and out of the hospital setting, once a lot of different health-care providers get involved in a person’s case, patient and caregiver participants reported becoming confused about who is making decisions about their care.

“It will come out that he or she doesn’t agree with the test results. And this is when you’re sent for more tests, you’re adding more doctors or specialists…and then you really sit back and you have to think to yourself from time-to-time, 'Well, who is the puzzle maker? Who’s getting all these pieces and putting them together?'”

“I counted one day…22 different people came into my little room and did this that and the other. I’d have to say they all did it very well, but I scratched my head and wondered, 'Jesus, who’s in charge?' Is this the way to run a railroad? And maybe it is, but it seems a little curious to me.”

Page 11: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Communication Between ProvidersMost patient and caregiver participants could recall at least one situation in which there were

gaps in communication between health-care providers and/or institutions.

“I think there is a wide gap between the, like the communication between the doctors, the family doctor and whatever specialist. You’ve got to push. You have to push; otherwise you won’t get your work done. You’ve got to run around, do your own thing if you want to get your work done. I think they…it’s like 'I don’t care about you.'”

“It’s fine when you’re with the specialist and you’re talking and everything else. But I don’t have the expertise that I can relate it to my GP. So my expectations are it will be provided and it was different getting back.”

“…the doctors within the hospital worked extremely well together and integrated extremely well. They do not necessarily share it with the family doctors who are outside the institutions.”

Page 12: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Communication Between Providers (Cont’d)

“Midwives were giving copies of all the medical records to my family doctor, to the [hospital’s] doctors. The [hospital’s] doctors would only send information to my family doctor, despite the fact that midwives were handling my care at the time. They didn’t want to communicate with the midwives, which really bothered me.”

“…I found that we needed to repeat our history to each person. You could see four people on this day, then you needed to start over again, then it was the same, as if they did not know our case.”

“They were supposed to call a specialist for me and I went back 6 months later for a physical and nobody had called anybody yet. 'Oh, you forgot about that.'”

Page 13: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Need to Repeat Case InformationPatient participants report frequently having to reiterate their situation each time they encounter a

new health-care provider, even within the same institution:

“Well, one of the things is the communication between the triage and the doctor. Like you’re spilling your guts out to the triage nurse only to spill it back out to the nurse practitioner only to be referred to the doctor, while you’re waiting through the emergency. Like, you’re spilling it three times, so you kinda get worn down, you’re broken down, you know, by that time and also you’re really not telling the doctor by that time, I mean, everything that you told to the triage when you were really excited four hours earlier.”

“Since November I think that I have told my history with my daughter, if not 500 times, then not once.”

Page 14: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Need to Repeat Diagnostic Tests

A few patient participants reported having to repeat the same tests for different health-care providers. This is a minor problem most believe could be overcome with electronic health records:

“When I had cancer, when I went to my own personal doctor, when I went to the hospital, the same blood tests were taken over and over again. I was just a…there is no reason that that can’t be put online. And…available. The same with drugs. There should be a central registry for drugs that you wouldn’t have to go to your doctor…or to your hospital to get the drugs, because push a button with your SIN number and you can find out what drugs you’re on and a specialist would know what it is. What the problem is…”

“…the urologists are on one side of this kind of, the nephrologist on the other side and they share a secretarial pool in the middle. They would both request the same tests for one child on different days at different times. So he’d get blood work twice and this became a real problem ‘till I put my foot down and said, 'You guys need to figure this out because this is unacceptable. There is no reason for him to be getting blood drawn twice for the same reason when you work in the same office.'”

Page 15: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Family Doctor’s Awareness of Health System Interactions

Many patient participants reported that their doctor was not kept informed about all of their interactions with the health-care system. Walk-in clinics and hospitals, in particular, rarely send patients’ records back to their family doctors:

“Occasionally I go to a walk-in clinic, because my doctor is hard to get to sometimes, and this one is close to home. So once in a while I go there and they never, never send the information to my own doctor. And that’s not right.”

“…I thought the hospitals had to…that’s why they ask you, 'Who’s your GP?' 'What’s their phone number?', because I assumed that they have a file or some sort of a directory and they know to send that information on to the doctor. That’s what I assumed. But I was assuming incorrectly.”

“I went to the hospital, I specifically asked them to send it to my doctor. They told me my doctor had to fax in a written request for that paperwork, for that file.”

Page 16: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Transmission of Personal Records Through the SystemPatient participants frequently reported having to take responsibility for getting their records from

one provider or institution to another:

“…when I went to my doctor he said, 'I haven’t been notified…I need the forms and I need to know what happened.' And so I phoned the hospital and they would not, at that point, send them to my doctor so I had to go and get them.”

“There was a little breakdown, I thought, between the family doctor and the OB not getting my test results fast enough…I actually had to go myself to the doctor’s office, get the results, go drive back to the specialist.”

“I’ve gone for my follow-up appointment and the receptionist has had to find it in the pile. He hasn’t looked for it yet.”

“I give them all the phone numbers. I carry the phone numbers with me for the doctor in the States, my family doctor, my medical specialist in London, and I make sure they send copies to everybody. Sometimes they do and sometimes they don’t.”

Page 17: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Transmission of Personal Records Through the System (Cont’d)

The patient participants also pointed out that they generally cannot be certain that their records and test results have been sent from one provider to another since most physicians have a policy only to notify patients if there is a problem:

“But when tests come in to my doctor, there’s kind of a negative option. If that’s the right thing that he says. 'We’re gonna give you a call if there’s anything in the tests.' And so I don’t know if he’s received the tests unless I call back and ask that.”

“If you do not intend to talk to your doctor, it is because all is well. But you can always think, 'Was that seen?' 'Were there any errors?'”

Page 18: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Health-care Providers Receive Test Results in Timely Manner

One patient reported that the doctor received his test results but did not look at them in a timely manner:

“I just happened to ask and then she [nurse] looked at it and says, 'Oh yeah, you better see the doctor when you go back.' So it’s like, you know, what’s up with that? You know, who’s actually looking at these results when they come in?”

Another patient had to wait 7 months to get the results of his tests because he was not able to get in to see his cardiologist sooner:

“You know, like I didn’t have to have the cardiologist there to give me the results of the tests. I could have had, you know, a nurse practitioner. I could have had somebody else who was available…Like I mean they should be working within teams within their own units.”

Page 19: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Transition Point Concerns

A number of participants experienced situations where they were expected to act as caregivers for their loved ones upon their discharge from the hospital, regardless of their circumstances:

“When dealing with hospitals, they are very quick to release a patient. You have that initial care…but once that’s been addressed they are very quick to release you. And not always with the proper follow-up. You know, with my father, I was very glad I was there because he’s not always on the ball. They asked him, 'Is there someone at home who could take care of you?' And he said, 'Yes, my wife.'…So I said, 'Dad!'. You know, my mother’s blind, my mother has mobility issues. And you know, in his mind, he’s thinking, 'Well she brings me a cup of tea once in a while.' You know, so in the condition he was in at the time I said, 'He cannot come home.' So they told me I was the primary care-giver!”

“Like you have to be very careful at the hospital when you have a relative. Don’t say, for example, you are working at home. That was my case. Because immediately they don’t give you any support, because you are a woman, you are a relative and you are obliged to take care of them at home.”

Page 20: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Transition Point Concerns (Cont’d)

According to the participants, arrangements for home care are usually left to the patients themselves or their caregivers, who found it difficult to access the necessary information and difficult to coordinate the logistics:

“…it’s not something where we know where to go or how to do it. There’s no info campaign to tell us. We just, oh oh, I gotta get my mother…and then you start reading up…”

“No I had to do a lot of digging. You know, it starts initially with some contact, you know, there’s some social agency or there’s a social advocate, you know, through the hospital or something, you know. There’s always a beginning, but from there I had to do a lot of digging for various things.”

“What’s available? What are your choices? I think before my mother left the hospital, there was an attempt to start talking about what are her options in terms of long term care and we didn’t feel, as a family, that we knew what to do….I think that’s the weakest link in the system, is dealing with and getting parents into proper good care…there’s not enough information given to the children.”

Page 21: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Policies or Procedures that Functioned as Obstacles to Integration

Only a minority of patient or caregiver participants mentioned specific policies that were barriers to receiving seamless care, however, this may reflect the fact that most policies and procedures within the health-care system are not common knowledge. Several mentioned that some of the policies surrounding qualification for home care are illogical:

“Part of the problem too, and I’ve known this to happen, if you can take a bath by yourself then you don’t need home care.”

“…a friend of mine had a mother who was going out into the kitchen with these sort of drapey garments on and leaning over hot elements, you know. And he had to get her into a home before she burned up and burned the apartment with her. There was no space. And do you know what one of the workers finally said? 'Tell them that you are just chucking her. You have no further use for her and you’re not doing anything to help her and then they will get her in.’”

Page 22: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Communication Regarding Care Plan, Follow-up and Post-Treatment Symptoms or Conditions

According to the focus group participants, patients are seldom called by their doctor or health-care provider to remind them about follow-up appointments or tests to monitor their condition. Some reported that their family doctor might remind them to go for blood work or screening tests at their appointments:

“It’s up to us to know when we have to go and then we make our appointment.”

“It’s unfortunate, but doctors are really busy and I know I have to go every year for certain tests, that I have to go every 2 years for another test, every 5 years for another test. And I’m supposed to try and keep track of it…”

Page 23: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Role of Patient in Coordination of Care

The patient participants are conflicted regarding the extent to which they should have to take personal responsibility for the coordination of their care versus how much responsibility should be shouldered by the system.

“…So how much is your family doctor an advocate for you, all the way through? And how much are you totally responsible?”

“The role of the family doctor is to…he can sort of be the facilitator, he can sort of be the person who gives feedback on your tests…and then make sure that’s clear to you.”

“I think, you know, in terms of advocacy, I don’t think that doctor is gonna be my advocate. I think I have to be my advocate.”

“You’re your own health advocate. You have to hustle your doctor. You can’t take anything for granted.”

Page 24: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Role of Patient in Coordination of Care (Cont’d)

“I feel it was well coordinated, but I also feel like, that I had to take an active part in the coordination of it. But I don’t feel that that’s necessarily a bad thing, because you don’t wait for your mechanic to call you and tell you to change the oil in your car, right? Like, it’s part of taking personal responsibility for how your body works and functions. So, you know, I anticipate that.”

“…on the whole, I think, you know, it’s important to feel empowered enough to step up and take charge of your own health care and say, 'Okay, I want you to communicate with my doctor and I want you to send copies of this here and there'. But I think that should really be in the system already. You shouldn’t have to tell them to give this information to your family doctor, that’s what your family doctor’s for. They’re a great repository of all your medical information, aren’t they? In my mind, that’s what they should be.”

“I think increasingly you have to be your own health consumer, because whether you’re using the Internet or talking to people or whatever…because quite frankly, doctors are busy and…they don’t seem to take the time anymore and I don’t think you can fault the GP. I think they’re just, actually stressed and they’re very, very busy and unless you sort of have some knowledge, self-knowledge about your own body and what’s happening, the symptoms and that sort of thing, I think the resolution of your problem’s gonna be much longer.”

Page 25: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Role of Patient in Coordination of Care (Cont’d)

Most patient and caregiver participants acknowledged that they shoulder some of the responsibility for ensuring they receive the health services they need, however, they sometimes face barriers in successfully doing so due to limited knowledge of how the system works and limited medical knowledge:

“I find what is important is, who will teach people how the health system works so they can take that position of helping to integrate the services that they need?”

“One thing I think they need is more education to people in the community. What facilities are available.”

“They take for granted that people understand, and they know what to expect.”

Page 26: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Role of Patient in Coordination of Care (Cont’d)Both patient and caregiver participants expressed concern about how patients who are not

capable of acting as their own advocate, and who do not have a caregiver to take on this role, will successfully progress through the system.

“…With my dad, every time I’ve gone, and he’s been to various places and I’ve been there. We have a big file. Now if I wasn’t educated and he wasn’t very organized, you know, and now he’s getting older so my sister’s got to help, but every time you go you have to fill in the forms again.”

“If you have someone to advocate for you. But if you’re single and your family lives in another province…Who advocates for them? Who looks after them?”

“Then there are times, the sick people do not always have the health for that. They worry about what they have, what they do not know, what that can impart, then, in addition, it is necessary that they are in charge of their medical file. These are steps that I think a sick person does not need.”

“Me, I ask myself how a person who is all alone, somebody with a family is fine, but a person who is all alone…”

“But for the elderly or people who are really handicapped or not functional people, who are not able to take care of themselves, that must be pure hell.”

Page 27: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Overall Patient Perspective of Quality of Coordination of Care

There is a greater degree of seamless care for patients who have been diagnosed with a common disease for which there is a standardized algorithm for screening and treatment, like colon cancer or breast cancer:

“…when the cancer centre got hold of me, they did the whole program and they set up CCAC, the home care for me…And then a blood clot came so the cancer centre arranged for a blood specialist for me…and then as a result of the chemo, basal cells developed, so my family doctor arranged to have, to see a specialist in Strathroy. So my family doctor was the guy that really got this going. And I must say they all communicate very well. For example, I went for a blood test 3 weeks ago in Ingersoll. It was emailed or transferred to my family doctor, to my specialist in Woodstock and to the cancer centre in London. So when I went to the cancer centre interview, they had all the blood work done ahead of time. And so I found the communication and the organization just wonderful.”

“…then I was diagnosed with breast cancer and once again everything just went like clockwork. Within two weeks I had, I had the x-rays, I had the biopsy…”

“With my husband’s situation, he’s, his diagnosis with colon cancer, the booking of the survery and then straight into chemo actually went so incredibly smoothly that I’m almost feeling guilty down in the corner here.”

Page 28: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Overall Patient Perspective of Quality of Coordination of Care (Cont’d)

The system, in general, provides better coordination of care once a diagnosis has been made.

“…your GP doesn’t really put his or her finger on it right away so sends you off here for tests. Sends you off there…Once they know what it is, then whamo, they get on it.”

“I think anybody here who’s first starting out and you’re trying to figure out what’s wrong and what’s there for you, it’s always a struggle. But after time, and then you find out what’s wrong, then you get connected properly, but you have to make sure you do everything yourself.”

Page 29: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Caregiver Concerns

The majority of caregivers felt overwhelmed by the responsibility placed on them to care for a friend or family member and questioned whether or not they could adequately fulfill this role. Some felt there should be a professional to give them guidance:

“I’ve sat with my husband for as long as 5 minutes when I take him in by ambulance, but 3 hours and then they ship him home and he dies 4 days later…They said, ‘You’re a nurse. You can look after him.’ He should have been left in the hospital.”

“Trying to get someone to explain that to them would be, you know…it would be different if say, a counselor could come in and explain all the ins and outs so that…Just like a liaison for people who were not educated in any way to deal with it. I have no idea where to turn to or how to just deal with it myself.”

“My father went through cancer treatment and had several surgeries…He was in the hospital for two weeks, then they sent him home because they needed the bed and the home care just showed up unannounced and two days late and then she handed my mother and I a bag of needles and the medication and said, 'Well when he’s in pain, give him one of these.' …And I said, 'We will not do that. You need to come back and administer this.' But, you know, that was an uphill battle. They didn’t want to do that.”

Page 30: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Caregiver Concerns (Cont’d)

Many caregivers have had to take temporary leaves from their jobs. A few reported that they could not work or had to discontinue working in order to care for their loved ones.

“I’ve tried working…but every time I go back to work, something else would go wrong.”

Aside from the above, the integration issues and problems described by the caregivers were identical to those mentioned by the patients. The patient and caregiver groups also both attributed the root of the problems to the same causes and suggested the same solutions (i.e. electronic health records and more health-care providers in the system). Moreover, both participants in the patient groups and those in the caregiver groups had a difficult time isolating their discussion of their experiences with the health-care system to that one role such that individuals in the patient groups often spoke about their experiences as caregivers while individuals in the caregiver groups also relayed their experiences as patients.

Page 31: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Effect of Integration Problems on Health OutcomesMost patient and caregiver participants felt that integration problems in the system cause more

psychological stress rather than physical damage. However, there were a few instances where coordination issues did have a negative effect on health outcomes.

“…you know if you run into the hospital because you had some kind of massive thing that could effect you in the long-run and then if your doctor’s looking at your file and she’s not aware that maybe such and such happened to you, you know, that, in the long run, that could affect you, but she’s not aware of it…Like when I was really sick at one point, I was so sick I actually went to the emergency, because I was so sick because of my ovaries and it would have been nice if that information had gotten back. I gave my doctor’s name. Then I went in to see her a couple weeks later and said, 'I’m still in a lot of pain.' But if she had seen that, she would have been paying more attention.”

Page 32: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Defining the Ideal, Integrated Health-care System The participants believe that electronic health records will ease their navigation through the

system by ensuring that every health-care provider or institution where they receive care will have accurate, up-to-date information about their medical history:

“It’s crazy, we are so far behind…there is no IT.”

“My various bits and pieces are dealt with at different hospitals. And if I’m scared or sick or out of it…I mean, I don’t remember where the records are, and why should I? It’s not my job to pull these out of a hat as to when I had what surgery and all this. It would take a long time, and besides, I don’t remember.”

Page 33: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Defining the Ideal, Integrated Health-care System (Cont’d)

“Frankly, I’d like to see more progress made on conversion to the electronic medical records. I know that this is a project that has…It’s begun and it’s taking years and it’s gonna take several years more and for the life of me, I can’t figure out why. But that is necessary, because as people will move from one specialist to another, it would be so much greater…better, if you just have quick access so you don’t have to regurgitate the same information and probably get something misinterpreted. So I’d like to see that being done more quickly.”

“To me, it’s sharing the information in a faster, clearer, more accessible way…It seems a lot of the time, you’re getting the same questions over and over again…So I think if there’s a computer, an electronic medical system. I know there’s also some problems with privacy with that and concerns with that, but I think probably the benefits outweigh the concerns about it.”

Page 34: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

5 Top Learnings

→ Most Ontarians have a difficult time conceptualizing “integration” of health-care services.

→ Heavy health-system users frame their impressions of the health-care system through their experiences as both patients and caregivers together, and do not separate their experiences based on the two different roles.

→ There is a high demand among heavy health-system users for an electronic health record system, and privacy is not a huge concern.

→ There is not a clear understanding among heavy health-system users regarding who or what is to blame for coordination problems (individual health-care providers or the system).

→ There is little knowledge, even among heavy health-system users, of how the system functions. While patients are increasingly educated about health issues, they do not have a comparable understanding of the system. This knowledge would be very helpful for both patients and caregivers to ease their navigation through the system.

Page 35: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

B. General Population Survey

Page 36: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Methodology – Quantitative Phase

→ An online survey was conducted with 1,015 Ontarians aged 18 and older.

→ The survey was fielded between April 29th and May 1st, 2008.

→ A telephone survey of this size yields results that are accurate to +/- 3.1%, 19 times out of 20.

→ The majority of respondents to the survey (82%) rated their health as either good (33%), very good (35%) or excellent (14%). Another 12% rated their health status as fair, and just 5% rated their health as poor. This suggests that the majority of survey respondents were not high users of the health system.

Page 37: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Key Findings and Analysis:Quantitative

Page 38: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Patient Perceptions of Doctors Unnecessarily Repeating a Test

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q2. In the past 12 months, has your doctor unnecessarily repeated a test?

Gender

Age

Page 39: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perceived Quality of Instructions From Health- care Providers

→ Seven-in-ten (70%) Ontarians say that they either always (40%) or sometimes (30%) receive good instructions from health-care providers regarding how to look after their health. Fifteen percent (15%) say they receive good instructions on how to do so only occasionally while 9% seldom get them, and 6% never get them.

→ Seventy percent (70%) of Ontarians also say that they either always (43%) or sometimes (27%) get good instructions from health-care providers on when and where to seek further care, if necessary. Thirteen percent say they receive these instructions occasionally, 10% seldom get them and 7% never get them.

→ Almost two-thirds (65%) of Ontarians say that they either always (35%) or sometimes (30%) receive good instructions from health-care providers on what symptoms to watch for. Another 15% receive such instructions occasionally, 13% seldom get them, and 7% say they never get them.

→ Age is positively correlated with the frequency which Ontarians feel they receive adequate instructions from their health-care providers: Older individuals are more likely than younger ones to report that they always get good instructions on how to look after their health, on what symptoms to look for, and when and where to seek further care, if necessary.

Page 40: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perceptions Regarding Instructions on How to Look After Your Health

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q3a. When you see a health-care provider (either in the hospital or the community), how frequently do you receive good instructions about: How to look after your health?

Gender

Age

Page 41: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perceptions Regarding Instructions on What Symptoms to Watch For

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q3b. When you see a health care-provider (either in the hospital or the community), how frequently do you receive good instructions about: What symptoms to watch for?

Gender

Age

Page 42: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perceptions Regarding Instructions on When and Where to Seek Further Care, If Needed

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q3c. When you see a health-care provider (either in the hospital or the community), how frequently do you receive good instructions about: When and where to seek further care, if needed?

Gender

Age

Page 43: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perceptions That the Health System Values Patients’ Time

→ Over half (56%) of Ontarians believe that the health system values their time; 41% do not believe this is the case.

→ More men (60%) than women (51%) feel the system values their time.

→ Among adults 35 and older, the belief that the health system values patients’ time increases with age.

→ Individuals who rate their health as excellent (61%) are more likely to feel the health system values their time compared with those who rate their health as very good/good (55%) or fair/poor (52%).

Page 44: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perception That the Health System Values Patients’ Time

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q4. Excluding visits to hospital emergency departments, do you find the health system values your time -that is, you are seen at the time of the appointment, you get what you need in as few visits aspossible, you get your tests done in as few places as possible, etc.?

Gender

Age

Page 45: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perception that Health-care Providers Have Access to Everything They Need to Provide Patients With High Quality Care

→ Over half (57%) of Ontarians believe that their health-care providers have adequate access to all the information, tests and records related to their health that providers need in order to provide them with high quality care; 41% do not agree.

→ Over age 24, the belief that health-care providers have access to everything they need in order to provide patients with high quality care increases with age.

→ Both level of education and income are inversely related to the belief that health-care providers have access to everything they need in order to provide patients with high quality care:

Income %

Yes

Less than $25K 67%

$25-less than $50K 62%

$50-less than $75K 55%

$75-less than $100K 54%

$100K or more 52%

Education %

Yes

High school or less 63%

Community college 59%

University 54%

Post-graduate/professional 50%

Page 46: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perception that Health-care Providers Have Access to Everything They Need to Provide Patients With High Quality Care

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q5. Are you confident that all of your health-care providers have access to all the information, tests andrecords related to your state of health that they need to provide you with high quality care?

Gender

Age

Page 47: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perception That a Single, Lead Person Coordinates Each Patient’s Care

→ More than half (54%) of Ontarians do not feel confident that there is a single lead person in charge and responsible for coordinating all of their health-care needs; just over 4-in-10 (42%) Ontarians feel confident that there is.

→ Among adults 25 and older, confidence that there is a single, lead person who is in charge and responsible for coordinating all of the health services they require increases with age.

Page 48: Exploring Patient and Caregiver Perspectives  on Integration in the Ontario Health-care System

Perceptions that A Single, Lead Person Coordinates Each Patient’s Care

OVERALL

Male

Female

18 To 24

25 To 34

35 To 44

45 To 54

55 To 64

65 And Over

Q6. Are you confident that there is a single, lead person who is in charge and responsible for coordinatingall of the health-care services you require?

Gender

Age