COGNITIVE TESTING OF THE NATIONAL PRIMARY CARE PATIENT EXPERIENCE SURVEY 2015

Transcription

1 COGNITIVE TESTING OF THE NATIONAL PRIMARY CARE PATIENT EXPERIENCE SURVEY 2015 Overview of the three phases of cognitive testing Report prepared for Richard Hamblin, Tania Simmons and Gillian Bohm, Health Quality and Safety Commission July 2015 by Alex Woodley, Point Research 0

2 Contents Background... 2 Phase One... 3 Method... 3 Questionnaire... 4 Focus Groups Part A... 4 Findings... 5 Phase 1 Part A... 5 Topic areas... 5 Overall Phase 1 Part A... 6 Phase 1 Part B... 6 Overall Phase 1 Part B... 7 Phase Two... 8 Method... 8 Findings... 8 Phase Three Method Findings Additional testing Appendix One: Consent form Appendix Two: Information sheet Appendix Three: Information for Primary Care providers Appendix Four: Focus group schedule Appendix Five: Letter to participants Appendix Six: Questionnaire to be tested Appendix Seven: Finalised questionnaire

3 BACKGROUND The Health Quality & Safety Commission (the Commission) is currently working with the Australian National Health Performance Authority to propose a set of measures of primary care patient experience. The measures will be aligned with international best practice and global trends and be able to be used to drive improved quality of care. The Australian based expert advisory group provided a draft tool which needed to be tested and amended for the New Zealand primary care environment. In March 2015 Point Research was commissioned to cognitively test, refine and evaluate the draft survey tool. Cognitive testing is used to understand how patients understand and interpret questions and instructions. The aim is to find out from patients: If the survey instructions are easy to understand; If the questions are easy to understand; If the questions are relevant; If the survey enables them to talk about what they think is important; If any important questions are missing. The assessment was to include cultural appropriateness and tested for suitability given patients experience of New Zealand s primary healthcare context. The proposed approach included undertaking three phases of cognitive testing with patients from the enrolled populations of six pilot Primary Health Organisations (PHOs) 1 participating in the process and refinement of the tool between those rounds. The first phase involves cognitively testing the questions with patients in fifteen focus groups from six PHOs; The second phase involves testing the draft set of questions online with a wider set of patients from PHOs, along with staff from practices, PHOs and DHBs; The third phase involves testing the revised survey on patients via patient interviews. The testing was to be undertaken between April and June The final deliverable will be a survey adopted nationally as a minimum standard for the PHO measurement of patient experience. This report provides an overview of the cognitive testing process and findings. It is noted that each phase is reported in full and is available on the Commission s website Note, the cognitive testing of this survey was not a full research project; and was subject to stringent and non-negotiable timeframes. 1 Primary health organisations (PHOs) are funded by District Health Boards to provide primary health care services, mostly through general practices, to people who are enrolled with the practices. 2

4 PHASE ONE Method Point Research began by meeting with the Commission and the representatives from PHOs to outline the plan and work through the steps required to invite practices to be part of the cognitive testing phase and contact patients within the time frames. Six PHOs agreed to participate in the cognitive testing providing a North Island, South Island, urban, and rural spread. Procare (Auckland); National Hauora Coalition (national but mainly providing services in Auckland, Waikato and Tairawhiti); Midlands Health Network (Gisborne, Taranaki, Taupo-Turangi and Waikato); Whanganui Regional PHO (Whanganui and rural areas such as Taihape); Compass (Wellington, Kapiti and Wairarapa); and Pegasus (Canterbury). It was decided that fifteen focus groups would be undertaken nationally, covering the following population groups: Adults aged years (2); Maori (2); Pasifika (2); Asian (1); Refugee new migrant (1); Older adults aged 65 years + (2); Younger adults aged years (2); Women (2); People with disabilities (1). The testing programme and establishment of the focus groups relied heavily on the work of PHOs and practices. PHOs were asked to confirm which type of focus groups would be held with their PHO and practices. They were also asked to introduce Point Research to practices and provide the practices with communications about the project from the Commission. Following the introductions of Point Research to the practices, the practices were then approached to populate the focus groups with patients from the population groups identified. Practices were asked to invite up to 10 participants to each focus group, provide the participants with the information sheet and consent forms (see Appendix One and Appendix Two), and then provide the names and contact details of those who consented to participate to Point Research. 3

5 The criteria for selection were that the patients belonged to the population identified and were available and consented to participate on the dates set. Some practices contacted existing groups, such as members of a consumer panel, to populate groups. Others put notices on notice boards or asked receptionists to invite patients when they came to the clinic. Point Research sent out information sheets and consent forms to each practice to give participants. Each participant was rung the day before the focus group to remind them of the time, date and location. The focus groups were held at venues familiar to the patients, either in a room at the practice or a local venue. Refreshments were provided and participants were incentivised with either a $40 voucher or $40 in cash depending on the recommendation of the practice. Questionnaire Prior to testing the survey received from Australia in March 2015 underwent an initial feedback process with the pilot PHOs, the Ministry of Health, the Royal New Zealand College of General Practitioners, the Commission, Cemplicity, and Point Research and was revised to reflect the New Zealand health care environment. A total of 74 questions were finalised by the Commission for testing, along with introductions and conclusions (See Appendix Six). Focus Groups Part A A total of 10 focus groups with 88 participants were held in: Henderson, Auckland - Pacific 5 participants + 1 PHO representative; Karangahape Rd, Auckland city - Asian 8 participants; Taihape - 11 participants; Whanganui - older adults 9 participants; Te Kuiti - rural 9 participants + 1 PHO; Tokoroa Maori 8 participants + 4 community staff + 1 PHO; Christchurch - disability 3 participants; Woolston years 10 participants; Christchurch - older adults 10 participants; Auckland - young adults 8 participants. Note that 8 people with disabilities attended other focus groups in addition to people with chronic conditions who, whilst not considering themselves disabled, said they found their conditions disabling. Those who considered themselves disabled said that they had sight, hearing or physical disabilities. The focus group schedule is shown in Appendix Four. 4

6 Findings Phase 1 Part A Initially it had been intended to run fifteen focus groups nationally. However, after ten focus groups it was clear that several issues were consistently emerging; Length of the questions: Many of the questions were considered to be long and overly wordy which made them difficult to understand. This sentiment was shared by many participants who felt that the questions could be simplified and shortened. Structure: The important part of the question is often at the end of the sentence. One participant pointed out that It feels like a lot of throat clearing before it gets to the point. Respondents felt that the important part should be at the beginning of each question; Unfamiliar language: Some of the language in the questions was unfamiliar to many patients, in particular words such as triage, primary health care, and cardiologist; Too many answer options: Some found the number of answer options too long and off-putting. Respondents found detailed questions to be overwhelming and off-putting. Some participants noted they would abandon the survey when the question options became too detailed. The very detailed response options were found to be confusing and expected precise recall of `insignificant events and the details were often vague to patients; Repetitive: They felt the survey was repetitive e.g. There is no need to repeat In the last 12 months and suggested that this be placed in the section introduction. Topic areas Their experience: Patients were asking for questions that allowed them to talk about their experience of care in the GP s surgery. Some people thought that some important questions were missing, particularly in regard to how they were treated by staff, and they felt strongly they wanted to report and respond to poor treatment and they did not have opportunities to do this in the questionnaire. In particular, they wanted to talk about: Wait times; Being listened to; Experiences with `rude staff; Having their questions answered; Not being rushed out of the door; Clinic access for disabled patients; Churn/ high turnover of doctors; 5

7 The availability of the doctor you want to see; Expense and staff not explaining costs up-front; Lack of choice; Receptionists/ admin staff (respectful, helpful); Translation/ interpretation questions. It was suggested that the section on being admitted to hospital should have questions about: Appointment cancelations; Different rules to GP clinic, such as being allowed to have family with you; The interpretation/ translation/ being able to communicate and understand. It was also recommended to consider asking a question about whether patients felt these issues had any impact on the quality of their health and safety. For example, patients who felt that they had been subject to `poor treatment believed it did have an impact. The question could be Do you think this had an impact on the quality or safety of your health care? (Options) Please explain. Overall Phase 1 Part A Initially very few respondents (fewer than 20%) felt that they would answer the questionnaire as it was boring, too wordy, too long, too detailed, and it did not ask questions about what mattered to them. Were these issues rectified, most said that they would be happy to answer the questionnaire as there were things that they would like to say about their experiences, both good and bad. In view of the early feedback, it was decided to stop testing the questionnaire after the first ten groups, modify the questions based on the feedback, and restart the testing process with the five remaining groups. In response it was decided to modify the cognitive testing process, analyse the findings, and review the questionnaire. The revised questionnaire was then subject to a second round of testing in the final five focus groups in Hamilton, Wellington and Auckland. Phase 1 Part B The survey was modified and retested with five focus groups in: Hamilton 1 (Maori); Wellington 2 (Pasifika and Women); Auckland 2 (Refugee and young people); The second round of phase one testing showed that: The questions are easier to understand; The questions that have been added quality and safety, receptionists, being listened to, and translators are important to patients. 6

8 Some new points for the Commission to consider have arisen: Some people felt they would want to give feedback about their family s experience, not only their own; Given the questionnaire asks people to reflect on the last 12 months, consider changing the focus from your usual GP to your current GP ; Participants would appreciate more opportunity for comment e.g. for feedback about specialists (other than GPs) and adding open text boxes to existing questions; Patients noted that they are only asked questions about the quality of service for GPs and nurses. They would like the opportunity to feedback on other services, such as allied health; Consider including in the section on hospitals a question about the user-friendliness of call centres. Maori focus group participants felt that it could be very difficult to get information on bookings and people in hospital, and transferred to the right person or department. Overall Phase 1 Part B This round of testing found the survey easier to understand, and clearer. The feedback was considered and the survey wording was adjusted to: Change the focus from your usual GP to your current GP ; Provide more opportunity to comment. Not all feedback was addressed, or addressed in this survey. It was felt that the length of the survey needed to be balanced against the additional areas people wanted to answer. For example, family experience has been noted. Should there be a survey on whanau and family experience developed at a later stage this point will be considered. The question on the userfriendliness of call centres in hospitals should be considered if a national out-patients survey is to be delivered. It was hoped that providing more opportunities to comment would also allow patients to feedback on the aspects of their care and treatment that they wished to. 7

9 PHASE TWO Method The survey was placed online and tested. PHOs, practices, and health professionals were invited to participate. In addition, patients who had attended focus groups were invited to do the survey online. At the end of the online survey respondents were asked if they would mind answering some additional questions about the survey, namely whether the questions were: Easy to answer; Clearly worded; Relevant to their experience. Respondents were also asked if there was anything they would have liked to tell us about the questions in the survey. Findings A total of 128 patients and health professionals responded. 57% said it was easy to answer, with an additional 29% finding it mostly easy to answer; 55% said it was clearly worded, with an additional 32% finding it mostly clearly worded; 51% said the question were relevant to their experience, with an additional 27% finding it mostly relevant to their experience. Note that patients (64%) were more likely than health professionals (55%) to find it easy to answer. Easy to answer by status patient or professional (%) Patients Health professionals No 4 3 Some 11 8 Most Yes Similarly, patients (69%) were more likely to find it clearly worded than health professionals (48%). Clearly worded by status patient or professional (%) Patients Health professionals No 4 5 Some 7 8 Most Yes

10 Lastly, patients (61%) were more likely than health professionals to say that the questions were relevant. Relevant by status patient or professional (%) Patients Health professionals No 4 10 Some Most Yes The key findings from the online testing were: The introduction needed to be shortened as it was off-putting; The length of the survey. Although questions were removed from the survey, the length of the survey was clarified in the introduction; Patients wanted more opportunities to comment. This added to the length of the survey, but the weight of comments suggested that patients and medical staff considered this to be a priority; The tense of some of the questions needed changing; Where questions referred to a previous answer these needed to be placed on the same page for easy reference; Ensure that the introductions and sections make it clear that the questions in the section relate to the past 12 months; Some questions required N/A or don t know as an answer option; Some questions required clarification, for example Emergency Department was clarified to ensure patients understood it was at a public hospital; The order of some of the questions was changed to improve the questionnaire flow; The open-ended questions were too open-ended. These were rewritten to be consistent with the questions in the inpatient survey; GPs are specialist doctors yet this was not distinguished in the survey. This was clarified to ensure that GPs were named as a specialist doctor too; Some of the question options were too long. These were reduced. It is noted that some of the suggestions did not result in changes to the questionnaire. This was because: Some of the suggested wording changes by health professionals were considered unnecessary as the question had cognitively tested well with patients; In several places additional options were suggested, e.g. in the list of clinics, it was suggested adding youth health centre, family planning clinic etc. In previous cognitive testing rounds patients had found long lists overwhelming; 9

11 Suggestions requiring more specificity, for example separating doctors and nurses, along with nurse practitioners, asking about admin and reception staff separately, or asking about each type of medication, would have added to the overall length of the survey; There needed to be an outcome question. This was not included as it would add to the length of the survey; The questions need to align with the New Zealand Health survey. Although some questions align, the questions are drawn from an international survey and cognitively test well; Some of the questionnaire was considered too subjective by health professionals. The subjective questions are the questions that patients feel most strongly about and want to feedback on e.g. respectful treatment and the acceptability of what has happened to them. They consider these key to feeding back on their experience; Staff would have liked additional questions about urgent access but this was considered adding to the length of an already long survey. Other concerns from health professionals were noted. These included: The questionnaire was simplistic; Staff are doing their best and these goals are unattainable due to a lack of funding; The tone of the survey was to find out if something was wrong; It was unclear how the survey would influence change; Patients won t answer the questions as they don t have computers at home; It will create work for practices. One practitioner asked if there would be resources if patients asked the practice to contact them; s from practices misrepresents where the s are coming from; Some staff expressed their unhappiness about having this survey. The findings of the online testing phase were incorporated into the questionnaire, along with other feedback from the Ministry of Health, the Commission, and the Royal NZ College of General Practitioners, ready for the third phase of testing, in which patients tested the questionnaire on their device and were interviewed. The primary focus of the groups was to test the questionnaire. Where there was time at the end of the focus groups and interviews, however, participants were asked: 1. How they felt about their address or contact details being used to send out a questionnaire i.e. if they were comfortable or had any concerns; and 2. Whether they preferred a survey sent by or post. There was little concern about their s or contact details being used to send the questionnaire as long as it was sent on behalf of the practice, that any feedback was anonymous (any names or identifiers were removed) so that practices could not see who provided the feedback, and the results were aggregated so that individuals could not be identified. The primary concern related to a patient s ability to provide confidential and anonymous feedback to practices without it affecting 10

12 their care and treatment. There was much discussion about various improvements that they would like to see at their practices and how this would provide an opportunity to provide this feedback in a non-adversarial way. Most participants said that they preferred surveys to be sent by , largely as they tend not to complete postal questionnaires, and if they do they don t always mail them back by the due date. It is noted, however, that some participants did not have an address. Those who preferred to be sent a postal questionnaire were more likely to be older adults and those participating in the rural focus groups. 11

13 PHASE THREE Method The third phase of the project was undertaken between 24 th and 26 th June 2015 and involved interviews with 19 respondents who tested the survey, wherever possible on their own devices, and were interviewed. The respondents were sourced from previous interviews and focus groups run by Point Research. These had been sourced through Councils, NGOs, the health and education sectors, and intercept surveys. In the previous phases some people appeared to have greater difficulty understanding and filling out the questionnaire than others; namely people with dyslexia, English as a second language, Pasifika peoples, Asian peoples, and younger adults. During the final cognitive testing phase, most (14 of the 19) respondents were selected with regard to difficulties they may have in filling out a questionnaire, such as a learning difficulty, exclusion from education, and lower levels of literacy or English. A further four respondents were selected as they had demonstrated in the past that they would be able to critically feedback on the wording, order and length of the questionnaire. The respondents included: Teen dads; People with learning and processing difficulties; People with English as a subsequent language; Pasifika; Maori; Younger adults. Findings In general, the respondents said the survey flowed well. The order made sense and didn t seem to `jump around or anything. Generally they felt that that none of the questions seemed to be unclear in purpose and they all seemed relevant. Clarity and ease completing the questions: Two of the younger men had some learning and processing difficulties and two women were dyslexic. They felt that there was nothing too difficult in the questionnaire, although they had to reread a few questions several times and misread a few (noted below). Stylistic suggestions: There were some stylistic suggestions - e.g. some questions were phrased using 'Were you' or 'Did you' e.g. Did you have any tests such as x-rays, scans, blood tests or other tests?', which seemed to imply that the time period the question referred to was all in the past 12

14 rather than being a period of the past leading up to and including the present. As these questions had tested well, they were not changed. Question sets: The length of the sections is uneven. Several interviewees wondered if there could be a better way of phrasing the introduction so the respondent wasn t expecting sections as long as the first section. This was not changed as most found the top bar, which tracks progress through the questionnaire, useful and sufficient. Length: Overall participants felt the survey was quite long, and was slightly repetitive at times. One of the patients said if she had to write long comments she would have given up (dyslexia), but liked that she had the option to either choose to go through quickly or stop and fill in stuff So it was long, but not frustrating. If she was filling it out for real she would have kept going until the end. Others noted that it would have been good to ask the questions in different surveys rather than all at once. Priorities: For patients in every focus group, and almost every interview, the most important questions to them were the set about being listened to, treated with respect, and treated with kindness. They felt that these questions went to the heart of the patient/healthcare professional relationship. There was a strong push from patients for these questions to be included in every section of the questionnaire. Some patients felt that their GPs treated them poorly and talked about the misconception that patients have a choice of health professional or practice. They contended that the good GPs `who care about their patients often have closed books and do not take on new patients. They also pointed out that many patients, such as those in rural locations, have very limited choices. Some said that they had tried unsuccessfully to change their GP. Specific issues There was a range of specific feedback relating to questions, question wording or logic (see Appendix Three). These are outlined in the Phase 3 report. In general, participants felt that: The introduction was too long. It was shortened; There needed to be changes to wording for clarity. Wording in places was changed e.g. health professionals other than a GP or nurse; Some of the question options were too long. These were reduced; Some minor grammatical changes were made to improve the readability of the survey; Some of the survey logic was changed to improve the logic and flow of the survey; The label `health professionals was considered narrower in focus than the label healthcare professionals. This was changed to healthcare professionals; There were technical issues that needed to be resolved with the survey on some devices. These were resolved with Cemplicity; Some of the questions were not relevant, these were deleted. And where two alternative questions were tested, a decision was made on which question was clearer to participants. 13

15 ADDITIONAL TESTING It is noted that in addition to the cognitive testing phases with patients, the Ministry of Health, the Commission, and the Royal NZ College of General Practitioners provided feedback on iterations of the survey. Their feedback was considered by the Commission and incorporated into the survey alongside the feedback of the patients themselves. The finalised survey roadmap incorporating all this change is appended (Appendix Seven). It is noted, however, that further changes may be made following piloting. 14

16 APPENDIX ONE: CONSENT FORM Testing survey questions about patient experience (for the New Zealand primary care survey) Consent Form I have received and understood information about the project and understand the project s purpose. I have had an opportunity to ask questions and have them answered I agree to participate in a focus group I agree for the focus group to be audio-recorded and for the facilitator to take notes I understand that I may leave the focus group and withdraw any information that I have provided prior to completion of data collection, without it affecting my access to health care services in any way If I withdraw, I understand that all information including notes about what I have said will be destroyed immediately I agree to protect other focus group participants right to privacy by not telling others outside the group what they said. My comments will remain anonymous, my name will not appear in the report, but people reading the report might be able to identify me based on what I say Your name Signature Your contact details (optional): Date: 15

17 APPENDIX TWO: INFORMATION SHEET Testing survey questions about patient experience (for the New Zealand primary care survey) Interview Information for Participants Name & contact details of researcher: Alex Woodley, Point Research has been contracted by the Health Quality and Safety Commission to hold focus groups with patients to test some survey questions. The aim is to find out from patients if the questions: Are easy to understand Make sense Are relevant, and if patients can answer them. We would also like to find out what you think and if any important questions are missing. The interview findings will be used to finalise the Commission s patient experience survey. The survey will provide information for the future development of health services in New Zealand. We would like to invite you to participate in a small focus group so we can hear what you think about the questions based on your experiences as a patient. You will not be asked questions about your health or health care. We just want to hear what you think about the survey questions. Whether or not you decide to participate will not affect your access or provision to health care services in any way. The focus group will take around an hour 15 minutes. We would like to record the discussion (sound only) and we would also like to take notes during the group discussions. You will not be named or identified in the report. You will receive a $40 voucher in recognition of your time. If you take part in this group you have the right to: Refuse to answer any particular question, and to withdraw from the project up to the time of submission of the findings (30 April 2015). Ask any further questions about the project that occurs to you during your participation. Be given access to a summary of the findings from the project, when it is concluded. Should you have any questions please speak to Tony directly or Alex Woodley on or at pointresearch@xtra.co.nz. Thank you, Tony O Connor and Alex Woodley (Point Research Ltd) 16

18 APPENDIX THREE: INFORMATION FOR PRIMARY CARE PROVIDERS Introductions Testing survey questions about patient experience (for the New Zealand primary care survey) Point Research has been contracted by the Health Quality and Safety Commission to hold focus groups with patients to cognitively test survey questions in the proposed national primary care survey. Cognitive testing is used to understand how patients understand and interpret questions and instructions. The aim is to find out from patients: If the survey instructions are easy to understand If the questions are easy to understand If the questions are relevant If the survey enables them to talk about what they think is important. If any important questions are missing. The cognitive testing will be tested in three rounds: Focus groups (15 groups of six patients) Interviews with patients using revised wording Online testing with patients. The interview findings will be used to finalise the Commission s patient experience survey. The survey results will be used to monitor and improve primary health services. Focus Groups To cognitively test the survey we need access to primary care patients their names and contact details. We will be holding focus groups with patients from six PHOs across the country. We would like to run the following 2 focus groups of 6-8 primary care patients in your area in the week of the 13 th April for : Older adults 65 years + Women We are asking your PHO to: Confirm a time and date for the groups Provide a room in which we can hold the groups 17

19 Introduce us to practices along with communications about the project provided by HQSC Provide the name of a local caterer so that we can provide refreshments to participants. Practices To populate these groups, we will be asking your practice to: Invite up to 10 participants to each focus group. (We will confirm the number of participants needed but it will be no more than 10) Provide them with the information sheet and consent forms (we will prepare these forms for you) Provide their names and contact details to Point Research if they agree (please copy in your PHO). Point Research will: Contact practices directly Send out details of the time, date and location of the focus groups, along with information sheets and consent forms Ring each of the participants prior to the focus group Organise refreshments Incentivise participants ($40 voucher) Report back to participants and practices at the end of the project. Next steps: If your practice agrees to participate, we would appreciate it if you could Point Research (copying in your PHO) with the name and position of the person at your practice we could liaise with, along with their contact details. Should you have any questions please speak to Alex Woodley or Tony O Connor on or at pointresearch@xtra.co.nz. Thank you, Tony O Connor and Alex Woodley (Point Research Ltd) Alex Woodley Director, Point Research

20 APPENDIX FOUR: FOCUS GROUP SCHEDULE Type of group Procare Compass Pegasus Whanganui NHC Midlands Mixed groups (24 64 years) 2 Aged Rural Māori 2 Māori i Māori Pasifika 2 Pasifika Pasifika Asian 1 Refugee New Migrant 1 Asian Refugee New migrant Older adult 2 Older adults aged 65 years + Older adults 65 years + Younger adults 2 Younger adults aged years Younger adults years Women 2 Women Women Disability 1 Disabled group 19

21 APPENDIX FIVE: LETTER TO PARTICIPANTS Address Date Kia ora Name The Health Quality & Safety Commission is developing a national survey for people to find out about the experience of people who use primary health services (go to their GP, practice nurse, use a pharmacist or other health provider.) The aim is to improve services to patients. Before it goes out to patients we need to find out: If the survey instructions are easy to understand If the questions are easy to understand If the questions are relevant If the survey enables them to talk about what they think is important. If any important questions are missing. We would like to invite you to be part of a small focus group to find this out. You do not have to participate and this will not affect your access to services in any way. An information sheet and consent form is attached. Please note that we will not be asking you any questions about your health. There are no right or wrong answers. We will only be asking you about the survey and questions i.e. whether they are clear and easy to answer etc. The group will take around an hour and a half and be held on: Time Date Place We will be offering participants morning or afternoon tea and a koha of $40 to thank you for your time and contribution. Please contact xxx if you would like to participate or have any questions. Warmest regards Alex Woodley Point Research Ltd pointresearch@xtra.co.nz 20

22 APPENDIX SIX: QUESTIONNAIRE TO BE TESTED Introduction Thank you for taking the time to complete this survey. It will take between 5 and 25 minutes depending on the extent to which you have experienced any ongoing health concerns and have used health care services in the past 12 months. If you get interrupted while completing the survey you can close the survey and just click on the link in the original to get back to where you were up to. The survey will remain open for 3 weeks. Please note that your response is anonymous and health professionals will only be able to view results in an aggregated form unless you request that someone contacts you at the end of the survey. Let's get started. About your health care - Main branch Q1_0 Could you tell us if you are answering this survey on behalf of yourself or someone else? Myself Someone else unable to answer this survey (Please tell us why): Q5_0 Section A. Regular place of care including GPs and practice nurses. A few questions about the place and people that you consider your regular source of routine and ongoing health care. Q6_0 Is there one primary care practice, health centre, or clinic you usually go to for most of your health care? [662282] 1. Yes 21

23 [662283] 2. No, I do not have a place that I usually go [662284] 3. Don't know Simple Logic: IF QO:[No, I do not have a place that I usually go] GOTO [Q12_0] Simple Logic: IF QO:[Don't know] GOTO [Q12_0] Q7_0 What sort of health care service is this? [662285] 1. A doctor s office, clinic, surgery or practice [662286] 2. A walk-in clinic such as a nurse clinic 3. An after-hours or an Accident and Medical Centre [662287] 4. An emergency department at a public hospital [662288] 5. A community health centre [662289] 6. A local pharmacist [662290] 7. Other [662291] 8. Don t know Q11_0 Does the place you indicated you usually go to have after hour access where patients can be seen by or be contacted by a doctor or nurse when they are normally closed? [662306] 1. Yes [662307] 2. No [662308] 3. Don't know Q12_0 22

24 Is there one GP you usually see? [662309] 1. Yes [662310] 2. No, I do not have a regular GP [662311] 3. Don't know Advanced Logic: IF ( [Q6_0]=QO:[No, I do not have a regular GP],QO:[Don't know] ) AND ( [Q12_0]=QO:[No, I do not have a regular GP],QO:[Don't know] ) GOTO [Q28_0] Q13_0 How long have you been seeing your regular GP? [662312] 1. Less than one year [662313] 2. One to two years [662314] 3. Three to four years [662315] 4. Five to seven years [662316] 5. More than seven years [662317] 6. Don't know Q15_0 In the past 12 months, have you ever waited longer than you would consider acceptable to get an appointment with Matrix (Radio Buttons) Side options Your regular GP? Any other GP at the practice you usually go to? A nurse at the practice you usually go to? Top options [662326] 1. No [662327] 2. Yes (please tell us why) TEXT BOX [662328] 3. Not applicable 23

25 Q16_0 In the past 12 months, was there a time you did not visit a GP because of cost? [662329] 1. Yes [662330] 2. No [662331] 3. Don't know [ADD TEXT BOX] Q17_0 In the past 12 months, was there ever a time when you thought that you needed health care but you didn t receive it? [662332] 1. Yes (if so, please explain why) [662333] 2. No [662334] 3. Don't know [ADD TEXT BOX] Q18_0 Now a few questions about the regular GP practice you usually go to for health care. Q19_0 When you contact your GP practice s office with an urgent health care question or concern during regular practice hours, how often do you get an answer that same day? [662335] 1. Always [662336] 2. Often [662337] 3. Sometimes [662338] 4. Rarely or never 24

26 5. I didn t get an answer at all [662339] 6. I've never tried to contact them by phone Q90_0 Here are some questions about your regular GP. Please answer each question using the column headings as a guide. Matrix (Radio Buttons) Top Options [662680] 1. Always [662681] 2. Often [662682] 3. Sometimes [662683] 4. Rarely [662684] 5. Never [662685] 6. Don t know [662686] 7. N/A Side Options [97039] Does your regular GP explain things in a way that is easy to understand? [97041] Does your regular GP seem to know the important information about your health care history? [97042] Does your regular GP or a practice nurse help you to coordinate or arrange the care you receive from other doctors and places when you need to? SEPARATE QUESTIONS Does your regular GP treat you with respect and dignity? Yes always yes sometimes no Does your regular GP treat you with kindness and understanding? Yes always yes sometimes no 25

27 Q25_0 Have you been involved as much as you wanted to be in decisions about your care and treatment? [662375] 1. Yes, definitely [662376] 2. Yes, to some extent [662377] 3. No [662378] 4. Not applicable OPEN TEXT OPTION TO EXPLAIN THEIR RESPONSE/ RATING NEW QUESTION If there is something you would like us to know about your experience of care with your regular GP, please tell us here. TEXT BOX Q89_0 This survey has several sets of questions covering different areas of health care. Below we ask you some general questions so we know which questions will be relevant to you as the survey progresses. Matrix (Radio Buttons) Top Options [662671] 1. Yes [662672] 2. No [662673] 3. Don't know Side Options [97033] 1. Do you take any medicines (including over-the-counter medicines) on a regular or ongoingbasis? 2. In the past 12 months, were you referred for any tests such as x-rays, scans or blood tests? 26

28 [97034] 3. In the past 12 months and excluding any overnight stay in a hospital, have you seen one or more different doctors or specialists, including your GP? [97035] 4. In the past 12 months, have you visited a specialist medical doctor such as a surgeon, a cardiologist or a psychiatrist? [97036] 5. In the past 12 months, have you been to a public hospital emergency department for your own health care? [97037] 6. In the past 12 months, have you been admitted to a hospital overnight? [97038] 7. Has any health professional ever diagnosed you with or treated you for a chronic health condition expected to last, or which has already lasted for 6 months or more? Q28_0 Section B. Medicines The next questions are about medicines, including over-the-counter medicines, you have used during the last 12 months. From now on we ll refer to these as medicine(s). Q30_0 Were you involved as much as you wanted to be in decisions about the best medicine for you? Yes definitely Yes to some extent No I did not want to be involved Q31_0 Did staff explain the purpose of the medicines you were to take in a way you could understand? Yes definitely Yes to some extent No Q32_0 Did staff tell you about possible medicine side effects in a way that you could understand? Yes definitely 27

29 Yes to some extent No Q33_0 Did the staff member tell you what could happen if you didn t take the medicine that was prescribed to you in a way you could understand? Yes definitely Yes to some extent No Q34_0 Did you take the medication as prescribed? Yes, definitely Yes to some extent No Can you tell us why? It was too expensive There were unpleasant side effects There were serious side effects I was given the wrong medication I was given the wrong dose Other Q36_0 In the past 12 months, have you ever been given the wrong medication or wrong dose by a doctor, nurse or pharmacist? [662430] 1. Yes [662431] 2. No [662432] 3. Don't know 28

30 Q37_0 Did this wrong medication or dose cause...? [662433] 1. A need for you to seek medical advice [662434] 2. A need for you to be admitted to hospital [662435] 3. A reaction requiring medical care [662436] 4. No health problem Q41_0 In the past 12 months were there times when you delayed collecting or did not collect a prescription due to the cost? [662449] 1. Yes [662450] 2. No [662451] 3. Don't know NEW QUESTION If there is something you would like us to know about your experience of medication prescription and management, please tell us here. TEXT BOX Section C. Diagnostic services Now a few questions about tests (such as x-rays, scans or blood tests) you may have been referred for in the past 12 months. Did a member of staff explain why you needed these test(s) in a way you could understand? 1 Yes, completely 2 Yes, to some extent 3 No 4 I did not need an explanation 29

31 Did a member of staff tell you how you would find out the results of your test(s)? 1 Yes 2 No 3 Not sure / Can't remember 4 I did not need an explanation Did a member of staff explain the results of the tests in a way you could understand? 1 Yes, definitely 2 Yes, to some extent 3 No 4 Not sure / Can't remember 5 I was told I would get the results at a later date 6 I was never told the results of the tests Q42_0 Section D. Specialist, Allied Health and Support Services Now a few questions about health professionals you may have seen or talked to in the past 12 months. Examples of allied health and support services are nurse, physiotherapist, psychologist, social worker, counsellor, pharmacist, and dietician. Q43_0 In the past 12 months, have you seen a doctor (other than your regular GP), specialists or allied health and support services? [662452] 1. I haven't seen anyone other than my normal GP or nurse [662453] 2. One person 30

32 [662454] 3. Two different people [662455] 4. Three to four different people [662456] 5. Five to six different people [662457] 6. Seven to ten different people [662458] 7. More than ten different people [662459] 8. Don't know Simple Logic: IF QO:[I haven't seen anyone] GOTO [Q58_0] Simple Logic: IF QO:[Don't know] GOTO [Q58_0] Q44_0 In the past 12 months was there ever a time when test results, medical records, or reasons for referral were not available at the time of your scheduled health care appointment? [662460] 1. Yes [662461] 2. No [662462] 3. Don't know [662463] 4. Not applicable Q45_0 In the past 12 months was there ever a time when doctors ordered a test (e.g. blood test, x ray etc) that you felt was unnecessary because the test had already been done? [662464] 1. Yes [662465] 2. No [662466] 3. Don't know [662467] 4. Not applicable Q46_0 In the past 12 months, have you received conflicting information from different doctors or health care professionals about the same condition? [662468] 1. Yes 31

33 [662469] 2. No [662470] 3. Don't know [662471] 4. Not applicable Q48_0 In the past 12 months did you wait longer than you would consider acceptable to see a nurse, physiotherapist, psychologist, social worker, counsellor, pharmacist, dietician or any other health professional other than a doctor? [662478] 1. Yes (Please tell us how long you waited) [662479] 2. No [662480] 3. I didn't need these services [662481] 4. Don't know Q49_0 In the past 12 months did you not see or delay seeing a nurse, physiotherapist, psychologist, social worker, counsellor, pharmacist, dietician or any other health professional other than a doctor due to cost? [662482] 1. Yes [662483] 2. No [662484] 3. Not applicable Q50_0 Now a few questions about specialist medical doctors that you may have seen or talked to in the past 12 months. Q52_0 Thinking about the most recent time you received care from a specialist medical doctor, how long did you have to wait between when you identified you needed care and when you received care? 32

34 [662488] 1. less than a week 1-4 weeks 1-3 months; 4-6 months Longer Q53_0 In the past 12 months did you not see or delay seeing a specialist medical doctor due to cost? [662492] 1. Yes [662493] 2. No [662494] 3. Don't know Q54_0 In the past 12 months, how many times have you been to a specialist medical doctor for your own health? [662495] 1. Once [662496] 2. Twice [662497] 3. Three to four times [662498] 4. Five to six times [662499] 5. Seven to ten times [662500] 6. More than ten times [662501] 7. Don't know Q55_0 In the past 12 months when you received care or treatment from specialists or consultants, did they do the following? Matrix (Radio Buttons) Top Options [662502] 1. Yes always [662503] 2. Yes sometimes 33

35 [662504] 3. No [662507] 6. N/A Side Options [96999] 1. Tell you about treatment choices in ways you could understand? [97000] 2. Involve you as much as you wanted to be involved in decisions about your treatment or care [97001] 3. Ask what matters to you Q56_0 In the past 12 months, was there a time when a specialist medical doctor did not have basic medical information or test results from your GP about the reason for your visit? [662508] 1. Yes [662509] 2. No [662510] 3. Don't know Q57_0 Does your regular GP seem informed and up-to-date about the care you get from specialists? [662511] 1. Yes absolutely 2. Yes to some extent [662512] 3. No [662513] 4. Don't know NEW QUESTION If there is something you would like us to know about your experience of your GP working with specialists, allied health and support services to provide you with health care, please tell us here. TEXT BOX 34

36 Q58_0 Section E: Emergency Department The next questions are about accessing health care from a public hospital emergency department over the past 12 months. Q55_0 In the past 12 months, how many times have been to a public hospital emergency department for you own health? [662517] 1. Once [662518] 2. Twice [662519] 3. Three to four times [662520] 4. Five to six times [662521] 5. Seven to ten times [662522] 6. More than ten times [662523] 7. Don't know Q62_0 The last time you went to the public hospital emergency department, what were the reasons you chose to go there? Multiple Selection (Checkboxes) [662533] 1. It was clearly an emergency I was taken there by ambulance [662534] 2. I didn t know if my health condition was an emergency [662535] 3. I was waiting to see a specialist but my health was deteriorating [662536] 4. I was waiting for a test or procedure and wanted it done sooner [662537] 5. I was told to go to the emergency department (e.g. by a GP, for the purposes of a follow-up, or for an appointment with a specialist who works there) [662538] 6. It was the only place to go [662539] 7. I go to the emergency department whenever I need care I can t afford to go anywhere else [662540] 8. Other (please tell us why) I was triaged by a nurse on the phone and advised to go there [662541] 9. Don t know 35

37 Multi select question: Q62_0 Thinking about the most recent time you received care from a hospital emergency department, was it for a condition that you thought could have been treated by your regular doctor/ place of care/ GP? [662542] 1. Yes [662543] 2. No [662544] 3. Don't know Q63_0 Does your regular GP seem informed and up-to-date about the care you received from the emergency department? [662545] 1. Yes absolutely Yes to some extent [662546] 2. No I haven t seen my GP yet [662547] 3. Don't know No Logic NEW QUESTION If there is something you would like us to know about your experience of your GP and the Emergency Department working together to provide you with health care services, please tell us here. TEXT BOX Q64_0 36

38 Section F. Admitted to Hospital. The next questions are about staying at a hospital overnight in the past 12 months and communication and coordination between the hospital and your GP. Q66_0 In the past 12 months, how many times have you been admitted to a hospital overnight? [662550] 1. I have not been admitted to a hospital overnight [662551] 2. Once [662552] 3. Twice [662553] 4. Three to four times [662554] 5. Five to six times [662555] 6. Seven to ten times [662556] 7. More than ten times [662557] 8. Don't know Simple Logic: IF QO:[I have not been admitted to a hospital overnight] GOTO [Q71_0] Q67_0 In the past 12 months how many nights have you spent in hospital altogether? [662568] 1. 0 [662569] 2. 1 night [662570] 3. 2 nights [662571] 4. 3 nights [662572] 5. 4 nights [662573] 6. 5 nights [662574] 7. 6 nights [662575] 8. 7 nights [662576] 9. 8 nights [662577] nights [662578] nights [662579] nights [662580] nights [662581] nights 37