Shared health information the way of the future, November 2012

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1 Shared health information the way of the future November 2012 Summary Document 1. Purpose In July, August and September 2012, the National Health IT Board (NHITB) held a series of public and community seminars to discuss improvements to the way personal health information is shared electronically. The seminars were a follow-on from the NHITB's 2010 Future of Health public workshops, and were held in New Plymouth, Christchurch, Invercargill, Auckland, Wellington, Nelson and Tauranga. They were an opportunity to provide updates on progress and gather feedback. The seminars were attended by 470 people, with around 200 attending the public seminars held in New Plymouth, Invercargill, Auckland, and Nelson. Community seminars for Asian, Māori and Pacific peoples, and for older people and students, were also held. As well, a number of District Health Board (DHB) briefings were held to discuss the impact of the changes on health professionals. 2. Background The National Health IT Plan was released in September 2010, following extensive consultation with and input from clinicians, vendors and consumers. By the end of 2014 the Government's aim is for all New Zealanders and the health professionals caring for them to have electronic access to a core set of personal health information. Connected Health branding Connected Health was introduced at the seminars as an existing brand of the NHITB, currently used in relation to the exchange of secure information via telecommunications. Connected Health is being expanded as a brand that can be used as an umbrella term for the IT systems and environments that securely share information. The brand will have a public focus, and cover the wider sharing of personal health information. Systems and portals displaying the Connected Health symbol will help reassure consumers that the information collected and accessed is high quality, secure and trustworthy. Security of information Security of personal health information is protected by rules and legislation, particularly the Privacy Act 1993, Health Information Privacy Code 1994 and Section 22 of the Health Act Health providers such as DHBs also have their own privacy and security policies, and information standards provide further security measures. Under the Privacy Act 1993, a person has certain rights regarding their personal information, including the right to correct it, see who has looked at the information, and to know what it is used for. Clinicians and health organisations have the important role of custodianship of that information. Information Governance Framework An expert advisory group has been established to develop a Health Information Governance Framework. The framework will support the Ministry, DHBs and service providers to securely manage health information at local, regional and national levels and it aims to appropriately balance clinical safety, consumer confidence and trust, and administrative efficiency. Issues being considered by the expert advisory group include who should 1 P a g e

2 have access to the Connected Health environment and whether (and how) access to some information is accessible to some people involved in a person s care but not to others. Consumer and clinician input The NHITB s Consumer Panel and National Information Clinical Leadership Group (NICLG) work closely with the NHITB to ensure consumer and clinician views are taken into consideration. During the seminars, representatives from the Consumer Panel and the Clinical Leadership Group shared their experiences. The Consumer Panel It is vital consumers are involved right from the start in the development of IT solutions that will impact on how their personal health information will be shared. The Consumer Panel, convened in late 2010, advises the NHITB on consumer-centred issues, especially the measures that will be needed to give people the confidence to allow their health information to be shared electronically. As we approach 2014, the challenge for the Consumer Panel is to make sure each link in the chain of measures required to justify consumer trust is in place and robust. Clinical leadership NICLG, which was established in September 2009, provides clinical leadership and input into projects and programmes that aim to achieve the ehealth vision. NICLG members represent a variety of professional bodies and colleges that provide leadership and support for clinicians in New Zealand. Benefits of sharing health information The benefits of sharing health information were discussed at the seminars. Every person with an NHI number: : will be able to log on to a computer and see their core health information will be able to view a set of alerts and allergies relevant to their health won t always have to repeat their medical history when they see someone new, or have tests repeated. Better, safer care will be provided, because health professionals will have a fuller picture of a person s medical history and the care they are receiving. Ernie Newman, Chair of the Consumer Panel, said Connected Health records offered huge benefits to consumers. There are challenging issues around privacy to be worked through, but they are well-understood, taken seriously, and being designed into the plans. He said privacy is a non-negotiable essential from a consumer perspective. The NHITB has a strong sense of accountability to consumers and is engaging with them. The Consumer Panel, and these seminars, are part of that engagement. 3. Seminar outcomes and themes Overall, seminar attendees were supportive of information sharing, while raising questions about access to information, information governance, and information security. These seminars provided an insight into the views of communities from the perspective of attendees, but do not necessarily represent the views of whole communities, or population groups. There will be more opportunities for people within communities to share their thoughts and provide feedback. Attendees felt a number of pre-requisites needed to be in place for them to be comfortable with the increased sharing of their personal health information. Common themes included: personal information that is held and shared with others needs to be trusted, reliable and accurate there must be the ability to keep sensitive information off the record or in a restricted sealed envelope people need to be able to make comments on their electronic record, and there must be clear processes for people to request a correction to their information it should be possible to access your own health information wherever you are in New Zealand or overseas considerable awareness and education is required in the future to ensure the public is aware of what the changes around the sharing of personal health information mean for them. Addressing these questions and concerns is a priority for the sector in the next two years. 2 P a g e

3 General public forums The key focus areas for the general public forums were governance and access to personal health information, ensuring equality of access, principles for handling sensitive information and ensuring privacy of information. Who has access to my personal health information? There were several questions about who governs a person s health information. There was agreement that people need to be able to choose and have a level of control over who accesses their information and what information they can view. There was a strong sense that people need to have the ability to set their own privacy settings. In certain circumstances a person may need to access a family member s information, for example, in the case of children or an elderly relative. Finding out how you can nominate people to access your information must be clear to the public. Access to personal health information by non-health professionals such as auditors, IT staff, and coders was raised as a concern. There was concern that, in the event health information is shared outside of health, ie, insurance companies or ACC, the person or their nominated representative needs to approve the wider sharing of their health information before this happens. Generally there was support for an opt-off system, provided the process is clear and people can make this choice. People need to be given enough information to understand how opt-off works. There was discussion on whether a person s full health record should be transferred, when they transfer to a new GP or other health professional. There was support for treatment providers being able to access their patient s personal health data while they were overseas (with patient consent), and for patients to have the same access when overseas. A recurring theme was concern that other parties, such as insurance companies and government departments, would gain access to an person s information and use it for another purpose, without consent. A robust and transparent information governance process needs to be implemented to avoid this. There was discussion about the need for people to have access to family members health records following death, for the benefit of future generations. There was comment that people should be able to choose what information to pass on and there needs to be information readily available to guide people through this decision-making process. Christine Britain from Consumer Panel leads a breakout session in Ellerslie, Auckland 3 P a g e

4 Equality of access Although there was support for an increase in sharing of personal health information, there was recognition that equality of access for all New Zealanders is paramount. It was suggested there needs to be a focus on ensuring everybody, no matter where they are in the country or overseas, is able to have electronic access to their core health information. This is irrespective of whether they have a computer, a desire to use a computer, or internet access. Although New Zealanders are seen as early adopters of technology there are still many who do not have easy access to computers and other electronic devices that support online interaction with health information. Other points were: the importance of providing support for consumers wanting to discuss their information and health needs by telephone the need to ensure alternative access options such as having information read over the phone for blind people, providing public library access to computers, smart phones and other mobile telecommunications devices. Sensitive information The topic of sensitive information was discussed in some depth at the seminars. There was consistent support for people to have the ability to place information in a sealed area. However, it was recognised there is a need to balance clinical risk - for example, where the clinician is missing information when deciding treatment - with patient requests for their information to be confidential. People define sensitive information differently. Information relating to mental health, sexual health, and alcohol and drug addictions was considered particularly sensitive. Attendees said clinicians need to see a flag that there is more information hidden, and perhaps contact details for someone who can provide that information. Likewise, the clinician needs the ability to keep information confidential from the patient, in certain limited circumstances. Generally, the hidden information should only be able to be accessed with the consent of the patient. However, there needs to be a robust over-rider to break the glass and access the information for example, in emergency situations if a patient is unconscious. It was recognised there are people who avoid presenting at hospital or GPs for a wide range of reasons. Others do not want their information to be known or shared, for example, for immigration reasons, or people needing protection from violent partners. This is an area not fully understood and it is crucial these concerns are addressed. Dr Andrew Bowers leads breakout session at Invercargill public seminar 4 P a g e

5 Privacy Those present at the seminars generally felt an audit trail where you could see who had accessed your information and when provided an acceptable degree of protection to support concerns regarding privacy. They felt reassured privacy issues have been recognised and that these issues will be considered carefully. There was recognition that electronic information sharing means more people would access a person s personal health record, and this makes it critical to have appropriate protections in place. There are varying degrees of sensitivity and comfort around privacy and confidentiality of information across the specific population groups that attended the seminars. For example, Māori appear to be more comfortable than some other population groups with the concept of sharing each other s health care information within their whānau. Health literacy Everyone in the group has been online to research a medication Seminar attendees felt health literacy was very important. Information needs to be presented in ways that are easy to read and understand, and aspects of health literacy need to be addressed such as comprehension, and the reading age required to support and understand the information is important. Information needs to be understood by those for whom English is not their first language. Health literacy will need to be further explored. The public needs to know which health websites are reliable, and recommended, and understand that not all sites provide correct information. Health professionals have a role to guide patients to reliable online sources of health information. Research Throughout the seminars there was support for personal health information continuing to be used for research purposes, as long as the information was anonymised, and, in the case of identifiable information, permission sought from ethics committees. Unanswered questions remain over the protection of people whose information is included in research. There needs to be a clear definition of what is identifiable information. Patient portals There was an expectation that the security around logon and access to a patient portal would be of a very high standard, and offer at least the same level of protection as online banking. Information available to people accessing their own personal health information online needs to be password protected. Sealed information needs to be further protected with a PIN or similar. 5 P a g e

6 Community seminars The community seminars helped the NHITB understand the varying family dynamics and roles and responsibilities of family members when managing the health of others in the family. Graeme Osborne Director NHITB leads a breakout seesion at Hui in Tauranga Māori communities One of the discussion topics at the hui in Tauranga was the needs and views of those in more isolated communities. Attendees felt that, in rural and isolated areas, there is limited access to internet services, and the cost to access the internet is prohibitive for some people. Flash phones kids know how to use them? Do we need computers? Many of the younger generation have mobile phones and smart phones and it was felt phones could be a more effective means for younger people to access their information, than computers. Having secure access to their own online health information in councils, libraries, and/or hospitals was seen as a possible solution to improve community access to Connected Health records. Self-management Māori need to walk through it, don t assume people will get it. There shouldn t be an assumption that people will self-manage their health without guidance and education. For example, for medication management education is required education equals compliance. Whānau ora is key. IT needs to support this. Connected Health will support whānau ora as information sharing empowers whānau to have a greater input into their own health care, and enables different service providers to work together, with whānau as the focus. The role of whānau ora providers in caring for communities was seen as very important. In many instances, it is whānau ora providers or social workers who create the information that will be shared, and in some areas whānau ora is the central care provider. Consumers need to be empowered to permit access by whānau ora and patients need to say yes or no to social worker and whānau ora access. Only my family to know this information. Attendees said Māori were comfortable with the concept of sharing health care information within their whānau. It was accepted people needed to be able to give authority to someone else when required. Attendees said the clinical view and the Māori view might be quite different, and there was a need to be mindful that there were big regional/tribal differences in practice. 6 P a g e

7 Geoff Cardwell from Consumer Panel supports discussion at older persons seminar in Christchurch Older people For older people and those caring for them, several themes emerged. It is important to have an enduring power of attorney, and to arrange this early while you are healthy. Some seminar attendees were concerned their wishes might be overridden by family members if they become unwell. There was comment that there needs to be greater public awareness of partial and enduring power of attorney. Should next of kin gain access to selected information if no power of attorney exists? It was suggested family members should only have access to core information about a person, such as diagnosis and medications, when assisting with that person s care. Do not resuscitate orders should be available for clinicians or consumers who have access to their health information record. There was recognition that many older people are IT aware and use computers, the internet and mobile phones. However, consideration needs to be given to those without internet or access to home computers, mobile phones or smart phones. There is a need to provide them with access to computers within their community, and to consider giving authorisation to specific persons to access information on their behalf (refer to equality of access). Some older people may be anxious about the information they view online, because of concerns about security. They may be anxious if they do not fully understand what they are reading, or this is not explained to them. Graeme Osborne Director NHITB presents at Fo Guang Shan Temple Asian Communities seminar in Auckland 7 P a g e

8 Asian Communities Those attending the seminar for Asian populations supported the move to the proposed electronic sharing of personal health information. There was comment that the family GP was often the gatekeeper of information, ensuring other providers only had access to relevant information. Family members may also visit Chinese clinicians for services such as acupuncture, and receive treatments including herbal medicines. There was discussion about how these treatments and providers would be incorporated into health records and care teams, and how access would be managed. Concern was raised over the safety and security of information held on a home computer. Where social or family situations change, there needs to be opportunity to easily remove or change access rights to personal health information. Additionally, there was concern about insurance and pharmaceutical companies accessing personal information, and other government agencies gaining access to personal health information over time. Pacifica Those attending the meeting with a focus on Pacific populations supported the sharing of health information. Privacy was very important, and family issues critical. Attendees said Pacific people at around 40 to 50 years of age may look to delegate their health care management to their children. There was considerable trust for the family GP, but it was agreed pharmacists should also have access to health information, as they play an important role in explaining medications. Giving dentists access to a person s broader medical history was also important, and a person s dental information should also be shared as there can be links to other medical conditions. Attendees said Pacific communities were particularly concerned about the information sharing with other government agencies such as immigration gaining access to their personal health information. 4. In conclusion The NHITB has appreciated the opportunity to hear what people think about the benefits and challenges of sharing health information electronically. The level of engagement with the issues has been pleasing. People have been keen to discuss what is planned and have raised some thought-provoking matters which we will need to consider. Good progress has been made since the Future of Health seminars in 2010, and the learnings from the 2012 Sharing of Health Information seminars are invaluable. The NHITB and our Consumer Panel and Clinical Leadership Group will work together and with other agencies and communities across New Zealand to facilitate the effective and secure sharing of health information. There will be further opportunity for feedback as we continue our work toward More information on our progress will be available on the and 8 P a g e

9 Graeme Osborne, Director NHITB presents at Taranaki Base Hospital Ernie Newman Chair Consumer Panel presents at Bar Italia Café, North Shore Hospital 9 P a g e

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