My Healthcare, My Future PDF - Public Perspectives on the Future of Healthcare in Ireland

Ipsos MRBI My Healthcare, My Future Public Perspectives on the Future of Healthcare in Ireland An Ipsos MRBI report, in partnership with MSD My Healthcare, My Future Public Perspectives on the Future of Healthcare in Ireland Foreword...

Ipsos MRBI My Healthcare, My Future Public Perspectives on the Future of Healthcare in Ireland An Ipsos MRBI report, in partnership with MSD My Healthcare, My Future Public Perspectives on the Future of Healthcare in Ireland Foreword Healthcare standards impact all of us and are consistently at the top of the social and political agenda. However, too often the voice of the patient can be lost or marginalised in the debate. GER BRENNAN With this in mind, MSD Ireland commissioned My MANAGING Healthcare, My Future to place the patient central DIRECTOR to the discussion. The objective was to create a MSD IRELAND platform for industry, government, the health sector and all interested parties to have an open debate, focusing on the opportunities available to provide a healthcare system that works better for all. This report is the first of its kind in Ireland examining the public’s expectations, hopes and needs in relation to healthcare. It is also unique in that it focuses on future possibilities and opportunities. This analysis spans all elements of the healthcare system including future expectations of healthcare providers and services as well as the opportunities provided by community-based care. With technology advancing rapidly, it is important to also understand how open the public will be to technological transformations, from centralising patient information to navigating multiple channels for faster healthcare delivery. Having an in-depth understanding of the public’s expectations of the Irish healthcare service will democratise quality healthcare and help us, both industry and government but also the wider healthcare continuum, to devise solutions that are relevant to patients and those most in need. We hope that the findings will contribute to an inclusive debate on the future of healthcare in Ireland. My Healthcare, My Future Public Perspectives on the Future of Healthcare in Ireland Contents 5 Introduction 11 Current Perceptions And Experiences 17 Desired Future Values 23 Improvement And Involvement 31 The Digital Age 35 Looking To The Future 39 Conclusions Introduction Background And Objectives What do the Irish public expect from healthcare services and delivery, now and more importantly in the future? Despite being the core service-user, the voice of the patient is often marginalised in discussions around healthcare in this country. Understanding and anticipating the hopes and needs of the Irish public is vital to ensure that basic expectations can be met and that an optimum healthcare service can be delivered in the years ahead. The broad objective of this market research is to provide a comprehensive exploration and measurement of public perspectives on the future of healthcare in Ireland. More specifically, it seeks to ask the Irish public a number of overarching questions, including: What influences our current perceptions of the Irish healthcare system? What are the values we want from our healthcare system? What are our expectations of healthcare providers and services in community and hospital-based settings? What factors can help to achieve a positive patient experience? How open are we to considering alternative channels of healthcare delivery? How willing are we to get involved in decision-making around our treatment? How important is timely and affordable access to health services and medicines? What impact might technology and e-health have in future healthcare delivery? Do we, the public, want a more prominent voice in shaping Irish healthcare? The backdrop to this research provides a stark reminder of the significant challenges ahead. Stories relating to health and the provision of care are rarely out of the Irish media. It could be argued that negative media coverage far outweighs the positive (our research suggests that the public certainly believe this to be the case). Budgetary and staff shortfalls within the system are well-documented, as is Ireland’s ageing population, which will place more strain on healthcare services in the future. This research does not task the public to create and develop solutions for the future, or to determine the specifics of how healthcare should be delivered in the future, but rather to articulate their hopes and expectations in an open, unconstrained manner. Of course, we cannot expect the public to design comprehensive solutions to the fundamental challenges facing the Irish healthcare system. This research can, however, provide a fresh perspective on the views of current and future patients and their vision of healthcare provision in Ireland. It is hoped that this research will deliver a unique insight into public perspectives that will inform the debate and help shape future policies and discussions. 06 Methodology Ipsos MRBI, commissioned by MSD Ireland, conducted a programme of market research, beginning in late 2015 and running through the first half of 2016. Quarter 4 2015 Focus Group Discussions With The General Public In-depth exploration of the public’s expectations regarding the future of healthcare in Ireland to provide initial direction. A series of four focus groups with a cross section of Irish society, covering men and women across a range of ages in both urban and rural locations. Quarter 1 2016 Telephone Survey Of 1,000 Members Of The General Public Measurement of the general public’s views on the healthcare system and the values they seek from the system. Quarters 1-2 2016 ‘Think Tank’ & In-Depth Interviews With Contributors Facilitated discussions and interviews with a sample of healthcare professionals and industry experts throughout the process to share and debate research findings. This report combines the results of all research stages, focusing predominantly on the views of a representative sample of Irish adults from both the telephone survey and focus groups, supplemented where appropriate with contributions from healthcare professionals and industry experts. 07 Research Highlights Access and affordability are key priorities for the future 92% It is very important that... 89% It is very important to have... 88% It is very important that... medicines access to services you need services in a will be are available timely manner affordable Respect and clear communication are essential for patients 85% 86% 71% believe that it is very believe that it is very believe that it is very important to be treated important to have important that you will be with respect when your illness/condition given the time you need using healthcare explained in clear when you see your services language doctor/nurse Most claim they are willing to be involved ? 92% are willing to ask questions if unsure of what a doctor/nurse tells you 85% are willing to be involved in decision making around your treatment plan 08 75% are willing to pay a fair price for health services Research Highlights Technology expected to play a pivotal role in the future 80% believe that it is very important that 84% believe that your GP/hospital 74% believe that the public should be technology will be should have allowed to access used to make healthcare access to your their own medical services better medical data online data online Majority are open to community-based alternatives 93% 80% are willing to use are willing to use a community-based pharmacist rather services rather than than a GP, if hospital-based, if appropriate appropriate Views of healthcare in the future are somewhat divided 39% are optimistic 40% are pessimistic 21% neither/don’t know 09 Current Perceptions And Experiences Current Attitudes To Healthcare To paraphrase an often used sentiment, before looking to the future, it is important to understand the past and indeed the present. This research is focused on the future expectations the public have of the Irish healthcare system. However, before looking ahead, it is important to acknowledge current sentiment and paint a brief picture of the public’s current perceptions of and attitudes towards healthcare in Ireland. When the public are invited to put forward spontaneous views and associations on healthcare in Ireland, as part of an open focus group discussion, one thing is clear - most people’s perceptions are, regrettably, grounded in overwhelming negativity, certainly at the outset. The discussion abounds with negative comments relating to hospitals, with the public describing and visualising long queues and patients on trollies. Concerns over the cost of healthcare emerge, with issues around a two-tier, public/private system that is perceived by some to be imbalanced. There are plentiful views on human resource issues in healthcare, whether it be acknowledgement of understaffing or suggestions of a system that is considered, by some, to have been mismanaged in years gone by. However it is important to note that while most of the initial responses are dominated by negative sentiment and criticism of Irish healthcare, positive viewpoints and experiences do emerge and provide a degree of balance to the debate. Many people speak passionately about their own positive experiences and interactions within the system, citing examples of exemplary care being provided by empathetic, professional healthcare providers. What is apparent is that experiences of our healthcare system vary, within different settings, among different groups and even for individuals themselves. 12 What Influences Our Perceptions? The public suggest that their perceptions of Irish healthcare are shaped by a variety of sources. One’s own personal experience is critical, as is the experience of family and friends, shared through word of mouth. Any negative experiences for ourselves or our loved ones tend to be magnified and hence are more memorable, heavily influencing our opinions. What is certain is that the quality of interactions with healthcare professionals is critical to the patient experience. While personal experience greatly influences our perceptions, the public also accept that any negative perceptions of Irish healthcare are fuelled to some degree by the media. The consensus is that coverage of the sector tends more often to be negative than positive. Our conversations with the public demonstrate that there are numerous positive experiences in our healthcare system, happening every day across the country, that often go unnoticed. Interestingly, the public are keen to hear more of these stories and this is outlined later in this report. “Positive stories don’t sell newspapers!” Focus Group Participant 13 Frequency Of Healthcare Interaction To better understand the demands placed on the Irish healthcare system, it is useful to identify the extent to which services in primary and secondary care are currently being used, and by whom. This research examined (i) the proportion of the adult population that have used various healthcare services in the past 12 months (either for themselves or with a relative) and (ii) the average number of visits in that time period across all adults. Level & Frequency of Healthcare Interaction Average number Have attended in of visits in last 12 last 12 months months GP 85% 4.7 Pharmacist 82% 8.9 Community/Public Health Nurse 17% 0.9 Emergency Department 28% 0.5 Medical or Surgical Consultant 43% 1.7 This data illustrates that significant numbers are attending community- based services such as GP surgeries and pharmacies. GPs are visited on average almost five times a year while visits to pharmacists are higher at almost nine times a year. Meanwhile, over two in five (43%) people have attended a medical or surgical consultant within the past year, with over one in four (28%) having had cause to attend an Emergency Department. Who is using services more or less often? It is useful to interrogate these results further to determine which groups within the population are using these services and how often, with some clear patterns emerging. Usage is generally higher among females, who are more likely to have attended GPs in the past year (88% of females vs. 83% of males) and who also visit GPs more often (an average of 5.1 times per year vs. 4.2 times for males). Females also visit the pharmacy more often (10.3 times per year vs. 7.5 times for males) and are more likely to have attended a hospital consultant in the past year (48% vs. 39% of males). Those with a medical card (who account for 31% of those surveyed) also attend their GP more often (6.5 times per year vs. 3.8 times per year for those who do not have a medical card). 14 How Confident Are We In Service Providers? Those with children under 18 years tend to use healthcare services to a greater extent than those without children, visiting a GP more often (an average of 6.1 vs. 3.9 times per year), the pharmacist more often (10.9 vs. 7.8 times per year) and a hospital consultant more often (2.1 vs. 1.4 times per year). Those with children also visit the Emergency Department twice as often as those without (0.8 vs. 0.4 times per year). In terms of different age groups within the population, it is perhaps not surprising that those aged 55 and over are more likely to have visited a hospital consultant in the past year (53%), compared to 37% of the younger 18-34 age group. However, it is 18-34 year olds that have visited the Emergency Department marginally more often in the past year, 0.7 times on average vs. 0.4 for older age groups. Not only are community-based services used more often (or perhaps as a result of this), but the research shows that the public have a high level of confidence in their ability to deliver appropriate healthcare services in the future. Almost seven in eight (86%) are confident in their GP, with almost the same proportion (82%) confident in their local pharmacist. Although only one in six (17%) have used a public health nurse in the past year, as illustrated earlier, over half (51%) of all people are confident in the public health nurse’s ability to deliver appropriate healthcare services in the future. Those with experiences of public health nurses in the focus groups generally perceived them to be hard-working, professional healthcare providers that are providing a valuable service in the community. For secondary care, meanwhile, 45% are confident in their nearest Emergency Department and 51% are confident in their nearest public hospital. In both of these cases, those that are confident outnumber those that are not. Future confidence in one’s nearest private hospital is marginally higher than in public hospitals. Confidence In Ability To Deliver Appropriate Healthcare Services In Future Net % Confidence Confidence Your local GP 2 3 10 33 53 86% Your local public health nurse 14 5 8 21 24 28 51% Your local pharmacist 23 13 32 51 82% Your nearest A&E departmnet 2 13 16 24 23 22 45% Your nearest public hospital 1 10 13 24 25 26 51% Your nearest private hospital 7 7 7 20 27 32 59% Don’t Not at All Not Very Neither Fairly Very Know Confident Confident Confident Confident 15 How Open Are We To Considering Alternative Channels Of Delivery? Throughout the research, members of the public shared their experiences of 93% significant waiting times and delays while trying to access both primary care and secondary care services. However, further exploration and anecdotal evidence suggests that in some cases, the care that is sought could often have been accessed through other healthcare providers, whereby the service in question WOULD BE WILLING TO could be provided more efficiently. It is important, therefore, to understand the USE COMMUNITY-BASED openness of the public to considering alternative delivery channels for services SERVICES RATHER THAN HOSPITAL-BASED appropriate to their needs. When the public are asked how willing they are to consider using community- based services, such as GPs and pharmacists, rather than hospital-based services, if it is appropriate to their medical needs, an overwhelming majority (93%) say they would be willing (with 3 in 4 saying they would be very willing). The out-of-hours doctor service, where available, was also cited by the public during the research as offering a valuable alternative, when needed, to visiting the Emergency Department. Furthermore, while the GP is often thought of as the primary care provider in the community, 80% of those surveyed say they would be willing to use alternatives such as their local pharmacist, when they require non-urgent healthcare services in the community. Community pharmacists were widely praised across our group discussions, in particular their willingness and ability to provide advice and consultation. The pharmacist is perceived by some to be the first port of call for minor medical concerns and can provide advice on whether or not a visit to a doctor might be appropriate. Some participants cite media campaigns that have encouraged this approach. The presence of private consultation rooms in community pharmacies is also welcomed by many people. Further evidence of their perceived value is apparent through the roll-out of new services in community pharmacies in recent years. For example, Ireland is cited as one of the leaders in Europe with regard to the delivery of the flu vaccination via pharmacies. Our qualitative research reveals that perceptions of community-based pharmacists are generally positive. They tend to be perceived as professional, helpful and giving of their time, playing an important advisory role to patients, 80% with many people claiming they are open to using a pharmacy where possible to free up GP capacity. Pharmacies also tend to be open for longer hours (e.g. late evenings, weekends) in comparison to GP practices. WOULD BE WILLING TO This openness to considering these alternative channels, albeit theoretical, is USE THEIR PHARMACIST encouraging. RATHER THAN THEIR GP “The pharmacy should be a step that you can go to before you go to 16 a doctor. They can advise you, and free up the doctor.” Focus Group Participant Desired Future Values Understanding And Managing User Expectations During our focus groups, the public expressed a desire for a minimal level and quality of service for their healthcare, one which at least meets if not exceeds their expectations. However, there is also an onus on the public for their expectations to be realistic. While a desire for a faster, more efficient, more affordable service is obvious, for the public it is often as important to know what to expect in advance in order for their own expectations to be managed. There is a sense among some people based on their experiences that the current health system is not set up to be patient-centric. It is worth contrasting how the public see themselves as users of health services and their experiences as customers of various other services in their “consumer” lives. Providers of various customer-oriented services in highly competitive sectors invest significant time and effort to attract and retain users, whereby it is in their interest to increase consumer demand and secure more customers. Consumers arguably hold a degree of power given their custom is in high demand. This is in contrast to any healthcare system, where higher numbers place a greater burden on a constrained resource and can negatively impact on the user experience. Discussions during the research process reveal that some people struggle to separate their expectations in healthcare and non-healthcare environments. Some believe that as users of health services, they are effectively “customers” whose expectations and desired experiences are similar to those received in other aspects of their consumer lives. “If it was more customer focused, you know, you’re customers. Make them exceed your expectations, make me feel better.” Focus Group Participant 18 Timely Access To Services Is Essential “There is an understanding among Among the top priorities for the public in their vision of a future patients that there will be a certain healthcare system is that it is one that will be easily accessible. wait time, 1-3 months for a (hospital) The ease and speed of access in particular is deemed the top appointment is ok, 6+ months is not” priority when asked to prioritise different healthcare service Healthcare Professional attributes for both community and hospital-based services. Almost nine in ten (89%) believe that being able to access healthcare services in a timely manner in the future is very important. This not only means being seen without undue delay but also, ideally, accessing that service within a reasonable proximity of one’s home. Exploration of the theme of access during the focus groups reveals that some members of the public can sometimes find it difficult to get an appointment with their local GP, particularly in certain urban areas or those with high General Medical Services (GMS) scheme populations. In contrast, the willingness of pharmacists to provide immediate and timely advice on medical concerns, either at the counter or in a consultation room, is widely appreciated. The public also cite long waiting times in hospitals as a recurrent source of frustration, whether it be delays in the Emergency Department, long waits for consultant appointments in the public system, or practices such as “bed minding” causing delays in admissions. Ultimately, the sentiment and desire for ease of access is succinctly expressed by one survey respondent; “That people can get seen to when they need to be seen.” 89% BELIEVE THAT BEING ABLE TO ACCESS HEALTHCARE SERVICES IN A TIMELY MANNER IN THE FUTURE IS VERY IMPORTANT 19 Healthcare That Is Fair, Equitable And Affordable The public generally accept that the provision of high- quality healthcare comes at a price. Our focus group 75% discussions revealed that, for the most part, there is a willingness among the public to pay a reasonable fee for accessing a quality healthcare service. In fact, three in four (75%) say they are willing to pay a fair price for using healthcare services in the future. SAY THEY ARE WILLING Furthermore, eight in nine people (88%) say that is it very TO PAY A FAIR PRICE FOR important that healthcare services will be affordable to USING HEALTHCARE them in the future. SERVICES IN THE FUTURE However, both community and hospital-based services are perceived to be too expensive by many. GP visits in particular, given they are experienced more often, are cited by some respondents as being expensive. This sense of expense is not merely limited to the GP consultation itself, with the public citing examples of the need to pay for additional appointments in primary care 88% to renew repeat prescriptions, which some believe to be somewhat unfair. One key source of frustration does emerge during SAY THAT IS IT VERY discussions around affordability; that of a two-tier, IMPORTANT THAT public-private health system that is seen to be unfairly HEALTHCARE SERVICES balanced. Private healthcare facilities are perceived by WILL BE AFFORDABLE TO the public to be more accessible, albeit at a price. Some THEM IN THE FUTURE members of the public express a desire for a single, universal health system for all, often citing the NHS in the United Kingdom as a model of this type that they are aware of. It appears that the key to affordable healthcare is that “(A patient in the private it is delivered in a manner that is perceived to be fair system) could get access and equitable. Ultimately, many Irish people believe to a consultant or get a that access and quality of healthcare should not be test done within a few dependent on the person’s means. days or weeks, whereas if you are in the public “That healthcare is fair to everyone – that is, system you might be treatment is not dependent on how wealthy waiting 3 months (or you are.” more)” Survey Participant Healthcare Professional 20 The Importance Of Respect And Dignity “When you’re treated like just a number, or almost in some cases, like an irritation.” Focus Group Participant This powerful sentiment expressed during our focus groups captures some 85% of the frustration experienced by members of the public when accessing healthcare services in Ireland. A recurring theme throughout the research is a desire to be treated with respect and dignity, both now and into the future, which is important for all age groups. OF ADULTS BELIEVE IT IS VERY IMPORTANT THAT 85% of adults believe it is very important that they will be treated with respect THEY WILL BE TREATED when using healthcare services in the future. The term ‘respect’ is broad- WITH RESPECT WHEN ranging and takes a variety of forms. USING HEALTHCARE Emotive stories elaborating on issues relating to respect and dignity arose over SERVICES IN THE the course of the research. These included examples of negative experiences FUTURE of family members treated in less than ideal settings and circumstances; e.g. spending significant time periods on trolleys and waiting in corridors; the delivery of diagnoses in public spaces rather than in private; or hospital wards not seperated by age or gender. The public also expect that healthcare professionals and the environments in which they operate adhere to best practice in terms of hygiene and cleanliness. By necessity, the delivery of healthcare is standardised where possible, but this is not always feasible. In some cases, this lack of standardisation and variability leads to a perceived sense of disorganisation and lack of accountability within the secondary care setting, further reinforcing concerns regarding respect and dignity. There is a continuing desire for these issues to be resolved both now and in the future, ensuring that patients are respected and receive a degree of empathy and privacy where possible. 21 Respect For My Time One of the common frustrations that is cited by the public in their use of healthcare services is that there can be long delays for both primary and secondary care appointments. Delays can also be significant at the point of service itself. This can disrupt schedules for those who have other responsibilities and cause the erosion of time that may be needed for work or family duties, including looking after one’s children. Two in three (67%) people believe that it is very important that healthcare services in the future will have respect for their time and for other responsibilities they may have. Our qualitative research reveals that GP services can be perceived by some people as somewhat inflexible. Patients cite examples of being told they cannot present with multiple issues within a single consultation, while others suggest they sometimes feel as though they are being rushed through their consultation by time-pressurised GPs with waiting rooms full of other patients to be seen. 71% of those surveyed believe it is very important that their healthcare professional (doctor or nurse) will give them as much time as they need when they are being seen. In secondary care, meanwhile, there is a strong desire for clarity around wait times; either immediate wait times for services such as Emergency Departments, or for longer-term appointments for hospital consultants. Through exploration of recent patient experiences during our focus groups, the public identified a number of ways in which they believe that the patient journey in secondary care can be improved upon in the future, which are outlined in the next section of this report. 67% 71% of people believe that it is very important believe it is very important that their 22 that healthcare services in the future will healthcare professional (doctor or nurse) will have respect for their time and for other give them as much time as they need when responsibilities they may have they are being seen Improvement And Involvement Improving The Hospital Journey For Chronic Illness Given the anxiety that is typically present for any patient attending a hospital appointment, the public strongly articulated the need for simple improvements which they believe will enhance their experience in the future. This can begin before the patient has left their home, when the patient is planning their journey. It is suggested that appointment letters can sometimes lack adequate information about the exact location that the patient should present him or herself within the hospital, with a sense from some people that hospitals can be complex buildings to navigate. A visit to a hospital website to seek guidance on directions does not always provide any greater level of clarity in this regard. Upon arrival at the hospital itself, orientation is not always straightforward, with the presence and quality of signage varying by hospital. The public believe that a greater level of clarity and consistency in this regard into the future would help alleviate some of their concerns. As regards the appointments themselves, frustrations can include long wait times for public appointments and multiple patients being scheduled for the same appointment time. While there is an appreciation that hospital consultants are a finite resource that are in high demand, a greater level of transparency and co-ordination around appointments would be welcomed in the future. 24 Improving The Emergency Department Journey It is important to note that the public recognise that Emergency Departments in Ireland are under significant pressure. The public believe this is simply due to the demands being placed on the urgent care system and inadequate resourcing and staffing levels to cope with this demand (and in many cases are positive about the personnel they have encountered); however, this does have an impact on both their perceptions and the user experience. Our discussions reveal that long wait times in the Emergency Department (ED) can frustrate and some members of the public struggle to appreciate that triaging is necessary and that the caseload must be prioritised by level of urgency. In fact, it is in the communication and management of queues in the ED where the public believe simple improvements can be made. Suggestions include a visible, transparent queuing system, whereby each patient knows where they are in the sequencing for care and ideally, knows how long they may have to wait. Furthermore, the ability to check ‘live’ wait times online before attending the ED would be considered useful, particularly for cases that in reality may be of lower urgency, whereby community- based services could provide a viable alternative. In general, it is felt by those who have accessed the ED system that a greater level of communication would be of benefit. This includes not only clarity on wait times (displayed both remotely and in situ, and reinforced by staff), but also the suggestion of a ‘patient liaison’. This is envisioned as an individual point of contact to keep patients informed of progress, timelines and generally be available for simple queries and reassurance. “The wait (in ED) never seems as long when you know how long you have to wait.” Focus Group Participant “No-one should have to sit for 6 hours without being spoken to” Focus Group Participant 25 Clarity Of Communication Is Vital 86% say it is very important that their illness or condition will be clearly explained in language they understand In exploring the vision of healthcare provision in the future, the importance of two-way communication is a recurring theme and is continually emphasised across all phases of the research. It is recognised that the more a patient understands their condition and treatment plan, the more likely they are to adhere to their medication. Many people admit that they sometimes struggle to understand what their doctor is telling them during a consultation and can get lost in medical terminology and jargon. When surveyed about the future, 86% of respondents say it is very important that their illness or condition will be clearly explained in language they understand. What is clear is that the public look to their healthcare professional for comfort, empathy, guidance and advice when attending them, because it is a time of stress. Among the significant challenges in the Irish healthcare system, using clear language is the simplest quick win highlighted by this report. Research shows that clear communications benefits everyone and it requires minimal investment. Healthcare professionals can use plain English in written communications and when speaking to patients. They can also check for understanding by using teach-back. This method means asking the person to repeat their understanding, in their own words, of the information given to them. This shows how well the healthcare professional has communicated their message and if the person does not understand, then they can restate or tailor the message to make it clearer. Inez Bailey, Chief Executive Officer, National Adult Literacy Agency Patients should be told why they are being given a particular treatment, or why a particular diagnosis has been made. The more people know about their condition and the more they understand about it and the treatment, the more likely they will comply and adhere to any treatment regimen. The more education and knowledge a patient has with ownership for their own health, the better outcome they are going to have. We need to support patient self-care. Kathy Maher, Past President, Irish Pharmacy Union & Community Pharmacist 26 Are We Willing To Be Involved? My Heathcare, My Future demonstrates the importance of engaging with the all key stakeholders, especially cancer patients and their families in order to reflect their needs with regards to 85% information and support. It is well documented that clear communication, information and believe it is very important that support can increase patient involvement, decision making, satisfaction with treatment and their medication and treatment reduce anxiety. plan will be clearly explained to them in language they Naomi Fitzgibbon, Cancer Nurseline Manager, Irish Cancer Society understand 92% claim they are willing to ask questions if they are unsure of what a doctor or nurse is telling them 85% of people overall claim they are willing to be involved in the decision-making around their treatment plan 66% believe it is important that the general public will have a voice in shaping healthcare services in the future Many people express a desire to fully understand their diagnosis and the plan for their care. 85% believe it is very important that their medication and treatment plan will be clearly explained to them in language they understand. However, a key question must be considered; are they willing to get involved and ask questions of their healthcare provider for clarity if needed? The majority of people (92%) claim they are willing to ask questions if they are unsure of what a doctor or nurse is telling them. Meanwhile, 85% of people overall claim they are willing to be involved in the decision-making around their treatment plan. However, this willingness to be involved in decision-making varies by age, being lower at 79% of 18-34 year olds and rising to 87% for those aged 35 and over. It is acknowledged that patient support groups can and will play a vital role in this regard, keeping patients informed and providing invaluable support to compliment the care being delivered by the healthcare professional. Support groups are also recognised as playing a pivotal role in patient advocacy. The need for the public to be central to any healthcare discourse is further evidenced in the survey, in which two in three (66%) believe it is important that the general public will have a voice in shaping healthcare services in the future. Females (72%) in particular are more inclined than males (59%) to believe it is very important that the public has a voice in the future. However, further exploration in the focus groups reveals that the public struggle to see how they can have a practical input into shaping the system, as many of the current issues identified are perceived to be somewhat insurmountable and beyond their control. 27 Life-Changing Medicines Play A Key Role The important role played by medicines in the successful delivery of “The drugs are keeping all healthcare solutions, both now and in the future, is recognised by the of our mums and dads alive public. They acknowledge the impact medicines can have, not only an extra 20 years or so” alleviating and resolving illness but also the vital part they can play in Focus Group Participant prolonging life. Whether the public want or need an in-depth knowledge of the specific medication they are prescribed is debatable. While medication adherence “It’s amazing, my is important, some are more interested than others in knowing about their grandmother died in her medicines. fifties from diabetes and The public acknowledge that progress has been made in certain therapy my mother is 81 having areas, having seen family members benefit from the availability of been treated for the last medications. These drugs are perceived to improve both life expectancy 30 years for diabetes…it’s and quality of life, now and in the future. (the drug) prolonging life” There is an expectation that this will continue to be the case in years to Focus Group Participant come, with on-going developments in a variety of therapy areas recognised by members of the public. Our discussions reveal useful insights about public attitudes to both the supply of and access to medicines. It is clear that while many people state they are and will be happy to pay a fair price for medicines, concerns also exist over the expense involved. Many people accept that prescriptions cannot be written and dispensed in an unlimited fashion, but all want fair access to the medicines that they may need in the future. 28 Limited Understanding Of The Complexity Of Access To Medicines Although the important role of medicines is accepted, a more detailed knowledge of the time and cost of drug innovation is understandably more limited in nature. There is an acceptance from some people that the pharmaceutical industry makes significant investments in medicines that needs to be recouped. In fact, 75% of those surveyed believe it is very important that the pharmaceutical industry invests in developing new medicines into the future. Although less is known about clinical trials, almost two in three (64%) believe it is very important that Irish patients can get access to new treatments early through clinical trials. However, the process around the facilitation of early or compassionate access to new medications is complex. New drugs often require a detailed pharmacoeconomic review before they can be made widely available. Our research reveals that for many people, much of their knowledge surrounding medicines has been informed by the media. Some are aware of positive advances that have been made through the development of new medicines in certain therapy areas. Others make the point that medications can in some cases be overused, and are aware of issues such as increased levels of antibiotic resistance. Looking to the future, over three in four (78%) believe it is very important that the Government and Health Service Executive (HSE) invest in making new medicines available to Irish people. Furthermore, the same proportion say it is very important that the Government and the pharmaceutical industry work together to ensure Irish patients get access to new medicines in a timely manner. “I have seen other people that have benefitted from drugs and it has completely changed their life” Focus Group Participant 75% 64% 78% BELIEVE IT IS VERY BELIEVE IT IS VERY BELIEVE IT IS VERY IMPORTANT THAT THE IMPORTANT THAT IRISH IMPORTANT THAT THE PHARMACEUTICAL PATIENTS CAN GET ACCESS GOVERNMENT AND HSE INDUSTRY INVESTS IN TO NEW TREATMENTS EARLY INVEST IN MAKING NEW DEVELOPING NEW THROUGH CLINICAL MEDICINES AVAILABLE MEDICINES TRIALS TO IRISH PEOPLE 29 The Digital Age Using Technology To Enhance Services Given the overall research objective of gathering patient perspectives on the future of healthcare delivery in Ireland, it is no surprise that technology came to the fore in our discussions with the public. As a nation we continue to embrace technology, with 74% of adults now 80% having access to broadband at home, and 72% owning a smartphone (source: Ipsos MRBI/JNLR Apr ’15-Mar ‘16). In times of medical concern, many people admit they often seek advice online from what is informally known as “Dr. Google” (rather BELIEVE IT IS VERY than a recognised source that a healthcare professional could direct IMPORTANT THAT them towards). Although the public admit that such access can be TECHNOLOGY WILL BE helpful, both they and professionals point out that it is not always USED WHERE POSSIBLE constructive given the wealth of online resources (and degree of TO MAKE HEALTHCARE misinformation) that exists, which can lead to patient self-diagnosis, SERVICES BETTER IN alarm, or mistaken reassurance. THE FUTURE However, consensus does exist that technology has the potential to enhance healthcare experiences greatly in years to come. Four in five (80%) of people surveyed believe it is very important that technology will be used where possible to make healthcare services “If you’re using a better in the future. What may be somewhat more surprising is that Smartphone, say you it is the 55+ age cohort who place greater importance on this, rather have to get a blood than those that are younger. test – you want to The public suggests a number of ways in which technology could know where you are in enhance their user experience in the future and eradicate some of the queue, you want to the issues outlined earlier. This could include the provision of up- know what department to-date, useful information online, such as Emergency Department to go to... lead times, or the ability to check the status of long-standing appointments, or simple online guidance for hospital visits. Use your phone and take away all the As part of The Health Identifiers Act 2014, any person who has used, hardship and the stress is using or may use a health and social care service in Ireland will and the person saying be given an individual health identifier (IHI). A public consultation okay, you’re going to be on the Privacy Impact Assessment for the IHI has recently been completed. It is hoped that the use of IHI will lead to a greater level four hours, when the of integration across services and improve patient safety. In fact, Smartphone can tell our research suggests there is surprise among some members of the you before you go.” public that such a system is not already in place. Focus Group Participant 32 Allowing Access To Medical Information Online There is acceptance that while the level and quality of digital information in Irish healthcare is improving, it remains somewhat isolated in parts and lacks complete connectivity. The future goal is a fully integrated healthcare service. 84% Our focus groups reveal examples of frustrating inefficiencies, such as patients being referred from one hospital to another and their hard copy patient file not arriving for their appointment in the latter. AGREE THAT THEIR However progress is being made, with the roll-out of e-referrals DOCTOR (GP OR whereby every hospital in Ireland is now capable of receiving an HOSPITAL) SHOULD electronic referral from a GP practice. The advent of e-referrals HAVE ACCESS TO THEIR and the ability for patient records to be available at any system MEDICAL INFORMATION touchpoint is generally welcomed by the public, with 84% agreeing ONLINE THROUGH that their doctor (GP or hospital) should have access to their medical ONE SYSTEM information online through one system. Almost three in four (74%) believe they should be allowed access their own information electronically or online. 74% Members of the public recognise ways in which technology has enhanced their user experiences elsewhere, for example, advances in online banking meaning less trips to one’s branch; or the ability to renew motor tax online, avoiding the need to queue at motor tax offices. Therefore, there is recognition that technology, when implemented correctly, has the ability to enhance user experiences if BELIEVE THEY it can remove a burden for the end user. SHOULD BE ALLOWED However, the unique nature of healthcare provision is also ACCESS THEIR OWN INFORMATION acknowledged. Many people believe it is vital that the face-to-face, ELECTRONICALLY OR inter-personal dynamic between patient and healthcare provider is ONLINE retained where possible into the future, with a degree of cynicism and scepticism from some people around using technology to deliver consultations remotely. “Nothing can replace face-to-face intervention because people need that human contact, whether it is a bad diagnosis or a diagnosis of some sort or for their reassurance, nothing can replace it” Healthcare Professional 33 Looking To The Future Share The Good News “I suppose you always have that negativity from media so you’re never going to hear the good news stories or you very rarely will have that good news story. It’s always the negative that’s being highlighted.” Focus Group Participant “I love a good news story and it makes you feel better about yourself to hear somebody else benefiting from something...I buy a paper that would have its fair share of good news stories in it just to kind of showcase the brilliant stuff that is happening in the pharmaceuticals, in the hospitals, you know.” Focus Group Participant The representation of the Irish healthcare system in the media has long been a source of controversy. One recurring finding that emerges in discussions with the public is their desire to hear a greater balance in this coverage and, in particular, to hear more positive stories about Irish healthcare, which they are certain exist. Current public perceptions of the Irish healthcare system are shaped by personal experiences in the first instance. However, the public recognise that the media has a significant role to play in influencing their views and believe that coverage tends to be dominated by mostly negative news stories. Prominent discussion shows on television and radio, as well as regular press coverage, are all cited as key sources where the portrayal of Irish healthcare generally tends to be unfavourable. The public also recognise that the politicisation of healthcare issues can also garner extensive media coverage, again reinforcing negative perceptions by highlighting deficiencies in the system. The public are confident that good news around Irish healthcare exists, citing many examples of positive experiences and the progress that they see is being made. They believe that on the rare occasions when positive healthcare stories are publicised, this news is generally not deemed controversial or exciting and therefore is not emphasised or given prominent positioning. The public also acknowledge that the negative focus in the media is not always fair to staff in the health sector, many of whom are perceived by the public to be overworked, in understaffed environments, yet who go out of their way to deliver quality healthcare to their patients. Given that plentiful examples of positive experiences and interactions in healthcare are taking place, as illustrated in our discussions, the public believe that a more balanced portrayal of the healthcare system by the Irish media would provide a better reflection of reality. It is acknowledged that such transparency in healthcare coverage is essential, with media broadcasters perceived by some people to act as the “voice of the patient”. 36 Are We Hopeful For The Future? Our final set of findings look to the future and ask the public to describe their level of optimism regarding Irish healthcare services in the future. The results reveal a nation divided; at an overall level, almost the same proportion of people are optimistic (39%) as are pessimistic (40%) about Irish healthcare services in the future. Those in the older age bracket of 55+ are more likely to be optimistic (45%) compared to those aged 18-34 years (35% optimistic) and 35-54 years (37% optimistic). Public Optimism About Irish Healthcare Services In The Future Don’t Know 1% 17% 9% Very Pessimistic Very Optimistic 23% 30% Fairly Pessimistic Fairly Optimistic 40% 39% Pessimistic Optimistic 20% Neither What might improve this optimism? It is a combination of all of the values and service improvements already outlined, delivered consistently. This is best summed up by one research participant as follows; “I would love to see, regardless of your status or your income, that everyone was seen as equal and respected for who they were. When they walk in the door it is irrelevant as to their background, they get the same care. That would be my ultimate goal in health” Focus Group Participant 37 Conclusions Conclusions Healthcare is undoubtedly a topic that stirs the emotions of Irish people, perhaps more than any other. Participants in this research process, whether part of collective discussions or individual interviews, spoke passionately about their hopes, expectations and what is of most importance to them in their future experiences. These expectations could not be deemed unreasonable. Rather, they are simply an expression of how people want to be treated, managed and communicated with when accessing healthcare services, which in turn will ensure they feel reassured, valued and confident in the care they are to receive. The issues raised in this report are challenging to resolve. Experiences will continue to vary across the Irish healthcare system. However, it is hoped that this research will give a voice to the Irish public and give direction to health stakeholders and policy-makers. It is perhaps best articulated as a simple wish list for the future; what values do Irish people want from healthcare services and how do they want to be treated? I want timely and affordable access to healthcare A strong desire exists among the general public that medical treatment can be accessed when needed, without unnecessary delay and at a fair price. Those working in the healthcare sector reinforce this desire; they generally agree that members of the public need to feel confident that they can access healthcare services as and when they are required. Currently, speed of access to primary care is perceived by many of those working in the sector to be reasonable – though it is acknowledged that this will vary depending on area (e.g. high GMS locations, or busy urban centres) as some have longer GP wait times than others. The need to pay for additional appointments in primary care to renew repeat prescriptions can be frustrating for some. The research indicates that patients in secondary care tolerate longer wait times than perhaps they should - a few months on a waiting list may be considered acceptable in certain instances. The definition of what constitutes a “fair price” is challenging and potentially divisive, as perceptions of this will continue to vary in the future. The public’s vision of healthcare in Ireland includes a system that delivers affordable healthcare, in a fair and equitable manner. However, delivering this balance will be difficult to achieve within the parameters of a two-tier healthcare system. A key challenge for the future will be providing a high quality, consistent service regardless of an individual’s financial means. 40 Conclusions I want to be treated with dignity and respect Once in the healthcare system, the public want to be treated with appropriate reassurance, empathy, privacy and respect for their time in a way that will enhance their experience. For many people, attending a medical appointment is an anxious and stressful experience, for example; receiving a diagnosis in an environment where a patient does not feel at ease, or experiences a lack of privacy, will not reassure or provide a sense of dignity or respect. While healthcare providers are believed to deliver these values to the best of their ability, many feel that the systems surrounding them and lack of adequate resources do not always assist staff members in doing so. The public believe that simple improvements such as the provision of transparency regarding wait times in the ED, or exact information about clinic locations within hospitals, could go a long way towards delivering a more positive patient experience. 41 Conclusions I want to understand my problem and the solution There is consensus across audiences that a sense of understanding and good communication go to the heart of delivering dignity and respect to patients. Those who deliver healthcare services on a day-to-day basis are aware that the language and terminology used can be quite confusing and acknowledge that it can be challenging for a patient to understand the problem itself, before even addressing the solution. Levels of understanding among a wide variety of patients will naturally vary, a key point acknowledged throughout the research. Patient advocacy and support groups will continue to be essential in improving the levels of understanding. Contributions from these groups highlight that when a patient has been given “bad news”, quite often this is the only piece of information that is retained, which is where these groups can play a key role in providing education and support. These organisations are believed to fulfil this vital role for many patients, quite often on voluntary and charitable basis. Best practice and clarity in two-way communication will help ensure that those who wish to be involved in their future healthcare are empowered to ask questions and fully understand their treatment plan. There is an expressed willingness among the majority of the general public to becoming involved in the decision-making around their treatment plan. However, the extent to which members of the public believe they can provide a genuine and informed contribution is less obvious. For many stakeholders, the pathway for patients to make such contributions to the future healthcare system is unclear, particularly as not all patients will have access to the appropriate networks or have the language skills necessary. While patient involvement is important, the challenge remains as to how to most effectively communicate with this wide and varied group. 42 Conclusions I want a modern, integrated, quality system The essence of future-proofing the healthcare service will be the delivery of a system that works effectively and provides the means for all stakeholders involved communicate efficiently. The importance of face to face interactions and the inter-personal dynamic between patients and their healthcare professional remain paramount, with the concept of technology and the use of remote consultations being viewed cynically by some members of the public. Modernity should not simply mean a technology based system, simply for technology’s sake. However, it is important that the future Irish healthcare system be able to keep a valid record of an individual’s healthcare interactions and outcomes over time. The record should be easily traceable and accessible by all those involved in the patient’s care – including the patient themselves. A patient with a particular illness should be confident that the quality of care they receive, as well as the treatment process involved, should be broadly similar in every Irish hospital. Technology should be used, where appropriate, to improve the user experience at key touchpoints, increasing efficiencies in the patient journey and readily providing information and data that is of value – the introduction of an individual health identifier (IHI) for example. Improving the patient journey will not only rely upon technological solutions, such as the provision of online waiting times and waiting lists for example, but also on delivering a future healthcare system that is based on two-way communication practices and promotes dialogue between a wide variety of stakeholders – those who deliver, support and avail of healthcare services. 43 Conclusions I want access to the best medicines for my care A healthcare system of the future will rely on the dynamics of trust and understanding between a patient and their healthcare provider and will need to give the patient confidence that they will be prescribed the best treatment for their care. The extent to which the public want or need an in-depth knowledge of their specific medication is debatable. The research suggests that there is limited appreciation of drug companies working with the Irish government to help develop and supply new medicines and treatments, through early access and clinical trials. However, the cost and associated expense for continuing access to medicines are among the greatest future concerns for members of the general public, with many referencing examples of cost differentials between Ireland and other parts of Europe. Looking towards the future, once people feel that they will be able to access the medicines they need, that these medicines will be used appropriately and that they will be accessed at a fair price according to user needs, then for many that will be sufficient. I want to hear more positive news stories The degree of balance in media coverage of healthcare is an issue raised by members of the public and stakeholders alike. A desire exists for the future public discourse around Irish healthcare to become more balanced, so that more good news and positive progress is shared to help build confidence in the future. There appears to be a belief that positive stories and experiences exist currently but are underreported. The media will always be a key source of knowledge and influence for the healthcare system and in many instances, will act as the voice for the general public, in the absence of any clear alternative. 44 Acknowledgements MSD Ireland and Ipsos MRBI would like to acknowledge the participation and valuable contributions made by the following during this research: Inez Bailey (Chief Executive Officer, National Adult Literacy Agency) Dr. Anna Clarke (Health Promotion and Research Manager, Diabetes Ireland) Richard Corbridge (Chief Information Officer, Health Service Executive) Bernard Duggan (Former Hon. Secretary Irish Pharmacy Union and Community Pharmacist) Naomi Fitzgibbon (Manager of Cancer Information Services, Irish Cancer Society) Mary Forry (IBD Nurse Specialist, Beaumont Hospital) Neil Johnson (Chief Executive Officer, Croí) Dr. Jack Lambert (Infectious Diseases, Medicine, Sexual Health (GUM) Consultant, Mater Hospital) Kathy Maher (Past President, Irish Pharmacy Union and Community Pharmacist) Mairead Mangan (Cancer Survivor, ARC Cancer Support) Dr. Derick Mitchell (Chief Executive Officer, IPPOSI - Irish Platform for Patients’ Organisations, Science and Industry) Professor Trevor Duffy (Rheumatology Consultant, Royal College of Surgeons, Ireland) A number of healthcare professionals working across primary and secondary care sectors. Over 1,000 members of the Irish general public who participated in focus groups and telephone interviews. 45  Ipsos MRBI About Ipsos MRBI Ipsos is a global independent market research company ranking third worldwide among research firms. At Ipsos, we are passionately curious about people, markets, brands and society. We make our changing world easier and faster to navigate, and inspire clients to make smarter decisions. Ipsos is represented in Ireland by Ipsos MRBI, Ireland’s longest established research firm. With a heritage stretching back over fifty years, Ipsos MRBI is renowned for delivering high quality, insight-driven, actionable research. We employ 35 full time employees, who are supported by a staff of over 200 experienced interviewers nationwide. Ipsos MRBI interviewers abide by strict fieldwork quality standards set by the ESOMAR International Code of Marketing and Social Research Practice and AIMRO (Association of Irish Market Research Organisations). We are dedicated to ensuring quality throughout all elements of our research, and in order to demonstrate this we became the first research agency in Ireland to be certified to ISO quality standards. 46 About MSD Ireland MSD, known as Merck in the United States and Canada, has operations in more than 140 countries. MSD employs approximately 2,000 people across its sites in Ireland, which encompass manufacturing, R&D, commercial and marketing facilities in addition to global support services. As a global leader in healthcare, we are dedicated to helping the world be well through a wide range of innovative health solutions. This includes the development, production and distribution of prescription medicines, vaccines and biologic therapies as well as animal health products. We also drive and support the on-going development of patient support initiatives. Our core values are driven by the desire to improve life, achieve scientific excellence, operate with the highest standards of integrity, expand access to our products, and employ a diverse workforce that values collaboration. Many of the most widely used MSD medicines are developed by our teams in Ireland, with over 60% of MSD’s global top 20 products now manufactured here in Ireland. We have invested hugely in the Irish market and our Irish sites are highly regarded, and renowned, by our colleagues across the globe. 47 My Healthcare, My Future Public Perspectives on the Future of Healthcare in Ireland Ipsos MRBI MSD Ireland Ipsos MRBI Red Oak North Block 3, Blackrock Business Park South County Business Park Carysfort Avenue Leopardstown Blackrock Dublin 18 Co. Dublin D18 X5K7 A94 D5D7 +353 (0)1 299 8700 +353 (0)1 4389000 www.msd-ireland.com www.ipsosmrbi.com