I welcome the representatives from the Health Information and Quality Authority, Dr. Tracey Cooper, Mr. Marty Whelan and Professor Jean Grimson. I again draw attention to the fact that members of the committee have absolute privilege but the same privilege does not extend to witnesses.
I thank the delegation for the paper it has circulated and which members have carefully studied. We would be grateful if the delegation could give a brief synopsis of the paper before we take members' questions.
I thank the Chairman. I am sure the members have had a long day so will get straight to the point on the presentation. On behalf of HIQA, I thank the committee for giving me and my colleagues the opportunity to outline our submission on the joint committee's report on primary medical care in the community. I am joined by Professor Jane Grimson, director of health information, and Mr. Marty Whelan, head of communications and stakeholder engagement.
Primary medical care in the community should play a fundamental part in ensuring that patients receive the right care in the right place at the right time. The written submission which HIQA previously submitted focused on a number of key elements that contribute to the importance of good quality and patient-centred primary medical care in the community. For the purposes of today's presentation, and within our allocated time, I would like to concentrate on a summary of these elements and will be happy to provide further detail on any element of our submission, should members so wish.
I will begin by discussing patient-centred relationships and information sharing in the primary care context. At the heart of effective high-quality primary medical care is the ability of the primary care team to develop respectful and open relationships. These relationships are both within and between a team, with patients and carers, other health and social care professionals, stakeholders and the commissioners of their services. These relationships are particularly important for patients who have long-term conditions and associated support needs, such as diabetes, epilepsy, heart disease and heart failure.
These patients will require ongoing interaction with a primary care team and, where appropriate, the majority of the management of their care should, and could, take place within the primary care setting. Currently, many of these patients are being treated within an acute hospital setting, where such an admission for treatment is sometimes unnecessary and can add additional time and stress for the patient. It can increase their potential exposure to health care associated infections, can result in increased bed occupancy and can add to the cost of the patient's care.
Related to the issue of the provision in management of care in a primary care setting, is a concern amongst GPs and their patients over a perceived loss of privacy once patients become clients of a primary team rather than of an individual GP. Where there is a need to share and discuss sensitive information about an individual's needs in a team meeting setting, it is of utmost importance that patients are clear as to the purpose of such information sharing. This is a particularly important consideration in small community settings where the individual being discussed is known to members of the team who have no direct involvement in their treatment.
As a result, it is imperative that patients receive effective support that meets their needs from the primary care team and that any exchange of information, and the purpose of such information sharing, is explained to and discussed with patients in order for them to have trust in the confidentiality process of the system.
The development and implementation of an effective public-friendly robust information governance framework is essential. The authority has a key role to play in this work and is of the view that the Health Information Bill will be a key enabler for the legislative terrain associated with information governance.
Regarding specialist services and workforce planning, there are already good examples of where GPs and the wider primary care team provide specialist services for specific conditions within a primary care setting. However, we believe there is an opportunity for this model to be expanded to better meet the needs of patients whose ongoing care could be better managed within the community.
Expanding the focus of more patient care management within the community relies on the necessary team-based support infrastructure to be in place. This includes access to the necessary medical, nursing, social and therapy support required to meet patients and carers needs, and safely support patients to appropriately remain within the community for their care. There will be an increasing demand for this infrastructure to enable more person-centred long term care, particularly as more of the population reaches old age and the emphasis on keeping people in their homes rather than in residential care increases.
Another desirable feature which would enhance patient care within the community is universal patient registration. This is a system whereby all individuals within the State are registered with an individual GP or primary care team. We believe it would improve the quality and safety of care for the patient, health promotion, disease prevention, chronic disease management and more effective and efficient planning for the provision and resourcing of health services to better meet the needs of our population.
Additionally the current shortage of GPs poses a threat to the ability of primary care to meet the increasing needs of communities. Therefore, there is a need for a workforce plan and an education training and development plan to be developed to meet the needs of modern primary and community care for the next ten years which identifies and establishes the number of training places for GPs that are and will be required to ensure a higher quality and accessible service to patients and communities in the future. This needs to connect and support the implementation of policies such as the primary care strategy of 2001.
To ensure patient-centred appropriate and safe care for patients within the primary and community setting it is necessary that GPs and the wider primary care team have direct access to the diagnostic tests and support services required to investigate and treat patients. To enable this a much wider range of diagnostic investigations needs to be put in place at community level in order to reduce the need for patients having to attend hospital outpatient departments simply to get access to a diagnostic investigation. It is also essential that there are effective communication arrangements in place for the ordering and result receipts of diagnostic investigations between GPs and their respective diagnostic services. This includes, but is not limited to, radiological and laboratory-based investigations.
There have been examples of breakdowns in the ordering, receiving and reporting of tests between the GP and the diagnostic service that have resulted in adverse events for patients. This is not acceptable. There is therefore a requirement to ensure that the most effective and contemporaneous arrangements are in place for the communication of diagnostic investigations between GPs, the wider primary care team and the diagnostic service.
There are examples where this already works well in Ireland, for example, in Healthlink. This is not, however, uniform across the country and there are, therefore, varying degrees of safe and effective mechanisms to enable such an important step in the diagnosis and management of patients across the country.
Primary medical care should be the common point of oversight and accountability for the ongoing and periodic care that a patient receives while residing in the community. It is within the primary care setting that complications often manifest themselves and where the window of opportunity for referral to specialist opinion is often instigated. It is essential, therefore, that each primary care facility, including single-handed practices, has effective and robust clinical link governance arrangements in place in order to ensure the quality and safety of the care that they provide and also for the oversight of care that their patients receive during periodic episodes of treatment from different professionals and health care facilities.
Where a primary care practice is small or if there is a single-handed GP, several practices can work together to support the time, knowledge, experience and resources required to establish such arrangements and the degree of objectivity required to manage them.
There are already excellent examples of clinical guidelines in the community, including referral guidelines between GPs and acute hospital specialists. These guidelines form a guiding framework for clinicians working within a community. This supports the clinician in providing evidence-based practice and keeping up to date, and supports patients' receiving equitable care across the country and being aware of the type and standard of care that they can expect to receive. The continued development of these guidelines should be supported nationally through an evidence-based and objective process that enables ownership by clinicians and patients at all levels of the service with managed plans for implementation. Such developments should be prioritised according to the key issues and risks for the patients, for example, antibiotic prescribing.
A key requirement for patient safety is the availability of accessible, accurate, robust and meaningful information that supports safe, appropriate, effective and timely care for patients. Without this the decision making of a clinician may be ill-informed and inaccurate and the safe transfer of a patient's information may be compromised, particularly when care involves more than one health care team and more than one facility.
Comprehensive and accurate aggregated health information about the public patients who access primary and community care is fundamental for health care professionals, providers, managers and policy makers to effectively ensure that the provision of health and social care across Ireland meets the needs of the population at any given time. It also further enables the effective and prioritised planning of services for the future. Much of this information should be populated at primary and community care levels. This work is of central importance to inform the quality of care available and to ensure that there is an appropriate focus on public health priorities so that patients are more effectively treated and people remain healthy now and in the future.
The collation, collection and monitoring of this critical health information is varied, sparse and in some areas prevents informed decision making regarding the provision of our health services. The need for robust information to drive quality and safety is well-proven internationally. In Ireland there is an urgent need to develop a fit-for-purpose information communication technology, ICT, infrastructure in primary care that is interoperable with other health care services. A well-designed and implemented ICT system for primary care would yield valuable health demographic and morbidity information, enable better planning and targeting of primary health care services, lead to significant cost savings by avoiding service duplication, inefficiency and waste, and improve quality and safety by, for example, reducing prescription errors.
In addition, there is a need to develop and implement a unique health identifier for every member of the population. This is crucial. It would be a key enabler for patient safety. A core benefit of the use of a unique identifier is that each individual's health information can be safely and efficiently accessed and shared appropriately through the health care system and be tracked on an individual basis through each patient's pathway of care. This will enable safer knowledge regarding the clinical history of the patient, including his or her previous care and any adverse events that may have occurred. Recent public research by the authority which focused on people's views on the use of their personal health information to improve safety and care showed that 86% of people believe that their health information should be linked up across the system. It was further found that 96% of people believe that the same number should be used to identify health information across health care settings and in respect of privacy issues. A total of 96% also said that they had the right to be informed of who has access to their information. This is a positive finding and indicates strong public support for the implementation of a unique health identifier towards the improvement of patient safety. The seamless flow of information enabled by the use of a unique health identifier is further supported by the implementation of an electronic health record. This will provide more accessible, accurate, and patient-owned information to be available to primary and community care clinicians in order to most appropriately manage and treat patients without the need for duplicating previous clinical history which may also lead to inaccuracies and unsafe decision making.
The electronic health record should also enable clinical decision support prompts that will support the clinician ensuring that he or she provides evidence-based practice. Similarly, the electronic health record has the potential to more readily enable data and information to inform clinical audits to support the clinician, and wider primary care team. The authority strongly supports the development and implementation of both the unique health identifier and the electronic health record and awaits the progress of the health information Bill in this regard.
The arrangements for the provision of a service by a GP and-or a primary care facility should involve a formal contractual arrangement that incorporates a clear expectation of the service or services to be provided, of the clinical governance responsibilities and accountabilities of the individual and facility, and of the quality and safety activity-based and demographic indicators to be measured and monitored. It is important that such arrangements are clear and explicit in order to ensure that all services provided are robust, effective, well-governed and the focus of the services and care provided is quality and patient safety.
On behalf of the authority I thank the committee for this opportunity to speak to it and I am happy to answer any questions it may have.
I thank Dr. Cooper for her comprehensive paper.
I thank the witnesses for their presentation today and for the documentation they sent in advance. Do they think the universal registration should be extended beyond the GP and the primary care team? I am thinking particularly of the pharmacist because people change pharmacist so often and it is necessary to ensure that they get the right medicines. Have the delegates done any research on the sort of information that people using several medicines receive, in terms of compatibility and how to be more efficient in the use of the medicines?
They also mentioned access to diagnosis which is a serious problem for GPs because of the length of time they have to wait. They often have to refer patients to consultants taking up unnecessary time for something that the GP is well competent to order. The same applies to patients going in as inpatients for highly specialised treatment, for example, after accidents. Somebody who breaks his or her jaw cannot be referred directly to St. James's Hospital. Children with a serious illness cannot be directly referred to Crumlin or Temple Street hospitals. They have to go to the local hospital. In some instances they are being sent away from the large centre to which one wants to send them. Has HIQA done any research into improving the levels and quality of service people get?
On the question of the members of primary care teams and the possibility of getting away from what I would call parallel line services where a patient may be with one service, say, the public health service for immunization, child development, etc., and the general practitioner is never informed of that. How can the management of the primary care team be streamlined?
I welcome the delegation. I want to ask one or two questions that relate to previous presentations. This morning we had community doctors in attendance and they appeared to be unsure about the transfer to HIQA in regard to nursing homes. Community doctors and social workers currently deal with complaints. We asked the representatives earlier how the transition would be managed between them and HIQA. Can the members of the delegation answer that question because they were somewhat unclear? For example, when they get complaints after HIQA has taken over, how do they communicate those complaints?
The other question relates to the previous presentation also. Representatives of the national cancer screening service were in attendance yesterday morning. I asked them when the health technology assessment report relating to the roll-out of a population based national bowel cancer screening programme would be published, and they suggested the HIQA representatives might answer that question. Do the witnesses have any idea on that? Also, will the quality assurance guidelines for bowel cancer being prepared by the European Commission be incorporated in terms of the proposals for Ireland?
Regarding Deputy O'Hanlon's query and the witnesses' own presentation, the witnesses spoke about patients being concerned about confidentiality in larger teams, particularly in communities where they would be well known, the sharing of information through electronic means and so on. How does HIQA ensure that confidential information is not spread too widely while ensuring it is conveyed in cases where it is beneficial to the person's health?
I apologise for having to leave the room briefly. I welcome the representatives of HIQA. They have been doing sterling work to date. I commend them on that and hope they continue in the same vein.
I, too, have concerns about the electronic record. I fully support the idea of a universal identifier. That is key. We cannot perform any national screening services without that because it will ensure people will identify the people they are supposed to be screening. As people are aware, the people who need screening the most are the ones who are always the last to come for it. The people who turn up for screening are those one would see anyway because they are health conscious.
Deputy O'Sullivan's point is well made. As a doctor I have to ask what business it is of the dentist or somebody else if somebody has had an abortion, for instance. Information like that must be screened in terms of who should have access to it. The point is well made in the HIQA document regarding small town Ireland where everybody knows everybody. They might not have anything to do with the patient but if they are involved in the primary care centre, people need to be reassured. When I set up in Lusk years ago one of my patients rang me because he did not want to be seen at the door in case somebody would see him. Things have probably moved on somewhat since then.
HIQA is the health information quality authority, which is fair enough, but who gathers the information? What sort of information is gathered? Under what aegis will it be used? Will it be anonymised before it leaves the practice etc.? The question of cost arises in terms of gathering all that information. Does HIQA have the resources to do that? I fully support most of what the witnesses said and I echo Deputy O'Sullivan's point about the community doctors who are concerned about where they will fit in to the overall scheme of things when it comes to inspecting nursing homes.
I was fascinated by the points on information sharing. I would have assumed from the outset that people who were to be part of this professional team would have access to information as appropriate but the Health Service Executive representatives told us yesterday that 113 teams will be in place by the end of January, which is very soon. What protocols are in place currently and what engagement has HIQA had with the HSE in terms of how information is to be managed and shared in the teams already up and running?
There are many trends around health information and if I may I will ask Professor Grimson to cover that aspect. I ask members to correct us if we leave anything out. I will outline the areas I will ask Ms Grimson to cover and the areas I will pick up later.
All the members asked questions about information sharing and the framework HIQA has to govern that appropriately. Deputy O'Hanlon raised the issue of universal registration and the potential to extend that beyond general practice, and the role of pharmacists with that. Deputy Reilly asked about the controlling of health information in regard to the electronic health record and how that is managed and balanced. He also asked who collects information and the costs involved in that. It would be useful to update the committee on our role around health information as a function of the authority, and we will cover some of that detail.
I will ask Professor Grimson to outline the engagement going on with the HSE and the Department in terms of implementing aspects of the national health information strategy. We talked about diagnostic services and a question was asked about the transfer of complaints and the HTA.
Ensuring confidentiality of patient identified data is critical. Once it is in electronic form it is much easier to share information than it is if it is in paper form and there must be a robust information governance framework in place to ensure the confidentiality of the data and the confidence of individual patients. It is a complex area which will be addressed in the forthcoming health information Bill, which the authority strongly supports. That critical legislation is needed.
There is a question of balancing the requirement to get explicit consent for every piece of information one might wish to share with another health professional with a system we currently have, which is based on implicit consent. If a patient is referred by their GP to an acute setting, there is implied consent that the GP can send a letter containing some personal information. An issue arises around duty of care. The sensible approach is where there is a duty of care relationship between the patient and a health professional, a system based on implied consent should be a safe system in which people can have confidence.
With electronic systems it is possible to provide layers of access, unlike with paper records where once one has the chart in one's hand, one has access to everything in it. With an electronic system one can have a more nuanced system which not only deals with duty of care issues but also one's role. As Deputy Reilly said, the dentist should not have information on whether a patient has had an abortion or anything else.
In terms of what is done with electronic records, some other countries have the possibility of what is known as a sealed envelope where one can have information in one's record which, if that information is to be disclosed, one must get explicit consent from the individual. That is something being considered as part of the health information Bill. A robust information governance framework is critical, as is a unique identifier in those areas.
A huge amount of data can be gathered, which if it is not completely anonymised data can be pseudo-anonymised. A great deal of statistical work, audit and population based monitoring can be carried out on pseudo-anonymised data. One must be able to link information together, which is why people talk about pseudo-anonymisation rather than full anonymisation, so one can link records of individuals together and get a picture of outcomes over time. One of the problems we currently have, for example, with the current hospital inpatient inquiry system is that it is episode based and there is no way of tracking individual patients who are re-admitted to the hospitals. In primary care, in particular, where one is caring for a patient over time, one needs to be able to link them. Again, it comes back to the importance of the health information Bill in setting the right legal framework for this and giving the public confidence.
The opinion poll we carried out was very important in this regard. We did not go into a long issue surrounding consent but it showed that 86% of the public felt that their health information should be linked up. Quite a large number thought their information was being linked up already. A high percentage also support a unique identifier. There is an acceptance of this among the public. We just need to ensure we have the right framework in place to be able to deliver it safely and with confidence.
I had to listen to the group's presentation in my office as I had to do something there. I wish to be associated with the welcome extended to our guests and I thank them for informing people like me, who do not have the same background as some of my colleagues, with simple, easy to read information. The material they have been sending me recently has helped me understand an issue in which I am interested.
Following other presentations over the last few days, the committee members have heard me speak about linkages and teamwork, to use the buzz word this week, even from the Taoiseach's mouth. I was not waiting for him to tell me that because I have always taken that view. I live in Tallaght, the third largest population centre in the country, where people are keen to promote community responses to health issues. There is an excellent hospital in Tallaght. I recall my father being very ill in St. James's Hospital. This is not about St. James's Hospital but people regularly told us that the safest place for him was outside the hospital. In that context and given our guests' remit, should we not create a situation whereby instead of people in Tallaght and elsewhere having to go to their hospitals, the consultants could come to the primary care units and health centres? Would that not be better and safer? What do our guests think about that? I consider it an important teamwork approach that is necessary. I made the point this morning that the HSE, in examining all these issues, should be talking, like this committee, to organisations such as the authority and the other organisations that have appeared before this committee over the last two days. It is an important point.
There are a couple of other general questions which I will come to but before that, there was a question about universal registration.
I apologise; I forgot to respond to it. There are huge advantages to universal registration. It provides a mechanism to bring together information about individual patients and having it all in the one place. There is a huge safety benefit. There is also a cost saving because it avoids duplication and so forth. This also links to a unique health identifier. These things can work together very effectively. Universal registration can offer huge benefits.
I will go back over the other general questions.
Please be brief. We have much to cover.
The issues of diagnostic services and direct admissions arose. Direct admissions done safely are key to getting the patients into the right place at the right time. This links to the Deputy's question about the community as well. Identifying where patients are most appropriately treated is not necessarily a case of running through the same route, that is, an acute hospital. We have some very good examples of direct admissions in the context of neuro work at present. In St. Vincent's Hospital there is general practitioner direct access to Dr. Niall Tubridy, who screens and provides advice with regard to primary care for patients, which is key. Diagnostic services is a factor too. If we are going to drive the reform agenda of integration and appropriate primary and community care, there must be the skills, resources and tools to provide it in the community.
An interesting approach, which other countries have done, is to examine the cost benefit of that. That means one looks at the cost of bed stays and the cost of acquiring a health care associated infection, for example, for patients going the normal route into an acute hospital and compare it with the investment in a community to provide better access to diagnostic services to prevent that. That is an area which potentially would be interesting to examine for the future and for health technology assessment.
We talked about the community doctors and the question of complaints and nursing home inspections. We hope to commence the nursing home inspection function in the coming months. Discussions are taking place at present with the HSE about what we would call the due diligence, as it were, of existing complaints — obviously, they must continue to be resolved — and the complaints function of the authority. Our mandate as an inspectorate would be where there is concern about the systems, governance and management of a facility, we would review that on a facility-based approach. Part of the process — Deputy O'Sullivan is right — and prior to us commencing that function is being very clear on the routes of protected disclosure, complaints and other concerns and also to ensure that both the HSE and private and voluntary providers articulate that very clearly in a consistent way for residents. That is a discussion we are having. I am glad the Deputy mentioned that because I will go back and look into it. If they were not sure about it, we need to make sure we are communicating.
There was also a question about the health technology assessment of the colorectal screening programme. We commenced that last year and it is drawing to a close. There is a final part of the process which is back into involving the advisory group and completing the report. We hope it will be received by the board of the authority in the near future. It will then be submitted to the national cancer screening service and the Minister.
There was a question about specialist clinics in the community. That is back to where I started in the general response. It is key where patients can be treated safely in the community. There are some very good models of not only consultants coming into the community but also general practitioners with specialist interests. It has been a point of controversy in many countries but in some models there are general practitioners who are trained very well, are very capable on specialist conditions and provide a community resource. However, the model will look different in different countries. In some countries there has been a very proactive push for consultants to conduct community based clinics, particularly for children and for long-term conditions. Consultant led walk-in clinics for children is often a good model that has been developed where acute services in a small hospital for children may have changed.
All these issues are key for discussion. If we want to drive the reform agenda to an appropriate resource, based for patients where they most need it, these are some of the issues that must be teased out.
I thank our guests for their assistance and presentation. If there are points on which we require clarification, we will correspond with them.
