Systematic literature review results
Out of 225 papers, seventeen were included that identified five web-based cancer SCP. These were based in the USA (3 SCP), The Netherlands (1 SCP) and one in Sweden (1SCP) which was under development. The Livestrong and OncoLife SCP were the same SCP which had been given different names over time. (See Figure 1 for the PRISMA search flowchart and Additional File 1 for a summary of the included papers).
The papers included feasibility and evaluation studies of the SCP technology (17-19), descriptive studies using SCP data and/or surveys/questionnaires on user satisfaction and participation (20-27), predictive modelling as to who receives a SCP(28), a review on the adherence, advantages and limitations of cancer SCP (29), a review with a focus on nursing practice(30) and a description of SCP systems that were under development at the time(31, 32).
The SCP were usually initiated by physicians/oncologists and cancer nurses. One SCP supported cancer survivors and their families and friends to create the SCP. The SCP was populated using the online responses to survey questions and clinical guidelines(17, 18, 20, 21, 23-26, 28, 30, 33, 34).
There was only one system that reported being integrated with the Electronic Medical Record (EMR) at a cancer centre. Demographics and treatment data were extracted from the EMR into the web-based platform and the final SCP downloaded back into the patient’s record in the EMR(17).
Two SCP documents could be shared via internet login(22, 29, 32) while all other SCPs needed to be printed or emailed as a PDF.
There were no papers reporting SCP systems that had interactive functionalities supporting collaboration, coordination and surveillance of care and monitoring of shared care. None of the papers reported formalised models of shared care between cancer services and primary care, although 32% of the survivors who had used one model reported they were receiving follow-up care from an oncologist and a PCP(21) and survivors older than 70 years were more likely to have a primary care provider(33).
Impacts reported in the papers, included that it changed the way survivors participated in health care and improved communication with health providers(20) and was an effective way to communicate(22).
Most survivors using one model planned to share it with their PCPs(18, 20, 23-26). Reasons for not sharing the care plan were that their provider would not care about the plan, they did not feel the plan was relevant to the provider or that the SCP was too long or it would upset the provider(24, 26). In other studies users reported that the SCP was easy to use (18), they were satisfied with the tool(18, 20, 21, 23-25, 30) and found it useful(19). In one study, survivors who were most likely to receive a SCP were managed by a team and were over the age of 70 years at diagnosis(28).
Key stakeholder consultation results
Twenty five key informants/stakeholders participated in the individual consultations and 13 key stakeholders participated in the group workshop.
Challenges identified to implementing the interactive SCP were mostly governance issues including security, privacy and the sharing of patient information. There were concerns about the security of systems not managed or controlled by the Local District Health Service and uncertainty as to whether electronic clinical information could be shared with PCPs and other external health providers under existing policies and regulations. This was a major challenge given the Local Health District would only provide access to a SCP to their own employees.
Another challenge identified was the lack of incentives for PCPs to participate and engage in cancer shared care under the current fee for service payment system.
It was agreed that the model of care needed to involve PCPs as members of the cancer care team. Patients and their PCPs would be invited to participate by the cancer specialist after a patient’s acute cancer treatment was completed.
Our initial thinking was that the cancer specialist would create the SCP and the cancer nurse coordinator would organise and monitor the sharing of care. PCPs would be provided with tasks to monitor reoccurrence, detect other cancers and to manage the late and long term side effects of treatment. Other tasks would address psychosocial issues, lifestyle and other preventive care needs of the patient, such as immunisations. The care team would feedback information after patient visits, indicate when tasks were completed and upload any relevant results into the care plan for the care team to view. A nurse coordinator would monitor that care was being provided and was timely.
Patients would have access to their care plan to self-monitor, report on progress or add their own goals as well as to provide feedback. They could be fast tracked back to the Cancer Service and PCPs could get advice from the cancer specialist through the shared care system or by phone, dependent on urgency.
The technology options identified in the group consultations had to support the model of care, the requirements of the state health system and the needs of consumers and the care team. Some of the identified requirements included that it be scalable to different cancer types and other services and conditions, be consistent and compliant with state and national ehealth and privacy standards, be easy to use, integrate with clinical systems, allow multiple user access, be affordable and able to be implemented relatively quickly for the pilot. It was initially conceived that this system would be hosted and maintained by the Health District or at the state level by NSW Health. The options identified for sharing the care plan are summarised in Table 1.
Table 1: The advantages and disadvantages of cancer shared care planning options
Options
|
Advantages
|
Disadvantages
|
My Health Record
(an online summary of an individual’s health record)
|
· Patient controlled
· Care team access
· View diagnostic and pathology results
· Integrated with general practice clinical information systems
|
· Does not have care plan functionality so needs work around if possible
· Not interactive to support collaboration
· Not all GP practices are connected to MHR (about 50% in area)
· Cancer Information System not integrated with MHR
|
Secure messaging
(Argus, HealthLink and Medical Objects are the main secure messaging systems)
|
· Most GPs have secure messaging installed
· Integrated with GP clinical systems
|
· Not interactive
· Version control of the care plan could be a problem
· Cancer Service would need to install 3 secure messaging systems to cater for the different systems in general practices that are currently not interoperable with one another
· Many allied health services do not have secure messaging installed
|
HealtheNet
(Secure sharing portal connecting a patient’s medical history from information systems within the NSW LHDs for clinicians within the health system to access)
|
· Can upload documents from the cancer information system to HealtheNet
· Provides access to NSW Health clinicians to view My Health Record
· Functionality to send the care plan using secure messaging is possible The SCP could attach as the follow-up action plan to a discharge summary
|
· Not accessible to external care providers unless they have associate status
· Not accessible to patients
· GPs cannot send documents back through HealtheNet
· Documents can only be viewed
· Would require some technical development to send the care plan to GPs through HealtheNet
· Does not support collaboration
|
Web-based cancer care plan creators identified in the literature
Oncolife / Livestrong, Passport for Care. The care plan is generated using an algorithm based on responses to a survey
|
· Patient creates and controls the care plan
· Passport for Care can be viewed online through the patient log-in
· Cancer specialist can upload a Treatment Summary to Passport for Care
· Livestrong is integrated with the Epic EMR (Epic is not widely used in Australia but is being implemented at Peter MacCallum Cancer Centre in Melbourne)
|
· Do not support collaboration between the care team
· None were integrated with GP systems
· Passport for Care designed for childhood cancers only
|
Collaborative platforms for businesses
(Web or cloud-based systems that support the sharing of information and collaboration)
|
· Supports collaboration
· Secure instance could be set up within the LHD firewall
|
· Challenges around sharing clinical information with clinicians external to NSW Health
· There are barriers to the use – requires log-in to a separate system, some difficulty creating and navigating the SCP and time required to set up access rights at the patient level
· Not scalable. Only suitable for a small sample of patients as a Proof of Concept
|
PCP care planning systems
(Online services to manage care plans)
|
· Truly interactive and support collaboration between team members and the patient
· Integrates with GP information systems
· Prompts and notifications included to assist with implementing and monitoring the SCP
· Some of these systems are compliant with NSW and Commonwealth standards
· GPs can claim the MBS Item for generating or reviewing the SCP
· Less expensive than developing a new system
· Scalable to other cancers, conditions and services
|
· Not integrated with LHD information systems
· Cancer staff need to interact with the care plan through the web interface
· Off the shelf product does not meet all functionality requirements
|
The first three options (My Health Record (MHR) - national electronic health record, secure messaging and HealtheNet) did not have the functionality to allow fully interactive collaboration between the specialist and primary care clinicians. The care plan could not be shared in an appropriate format in MHR. The care plan could be shared using secure messaging and HealtheNet, but there were barriers to PCPs accessing HealtheNet as access was restricted to state health employees.
The fourth option were the web-based cancer care plan creators identified in the systematic review (See additional file 1 for details on these systems). These provide a useful tool, particularly for patients, to create care plans using algorithms based on the guidelines for follow-up treatment. The main disadvantage of these systems was that in their current state they were not interactive so did not support collaboration, coordination or surveillance of care.
The next option was an off the shelf collaborative platform. These are developed particularly for businesses to share information and collaborate. We set up a care plan in a commercially available collaborative platform as a proof of concept but were informed that patient information could not be shared using this platform due to the state health privacy and security concerns around the sharing of clinical information with external health providers. Other barriers with using this platform were difficulties with using the system, access and scalability.
Given that sharing information at the Local Health District level with external providers was a problem, we looked to the primary health care sector for off the shelf solutions. A number of PCP care planning solutions were available that were integrated with PCP information systems, supported patient and care team access and were relatively easy to use. Eight of these systems had self-declared compliance with the Commonwealth Department of Health minimum requirements for shared care planning software as part of the Health Care Home trials(35) and two of the systems were utilized in the NSW Health Integrated Care trials with varying success. We selected a system based on a set of requirements including compliance (e.g. ISO information security management, mandatory privacy and security legislation and NSW Health standards and guidelines for information management and sharing information, current penetration test), technical requirements (e.g. integrated with PCP systems), functional requirements (e.g. notifications and alerts, supports care pathway, easy to navigate, customisable cancer care plan template), readiness and maturity of solution, scalability and costs to develop and maintain the system.
To utilize PCP care planning systems required a rethink of the care plan pathway (see Figure 2). The process would be initiated by the specialist and providing a treatment summary to the PCP and inviting them to join the shared care team. The PCP would then initiate a standard care plan (for that particular cancer type), upload patient and clinical information (including the treatment summary provided by the oncologist) and provide access rights to the cancer specialist and other providers (eg allied health). The specialist would then review and adjust the schedule of tasks, add in who was responsible and the timeframe for their completion. The PCP (with the patient) would then approve the final care plan and set up patient recall in their practice system. The PCP and oncologist and other team members would notify when their tasks were completed and share other relevant information collected during patient visits. Patients could also notify tasks they were responsible for (eg attending a physical activity program). The cancer nurse coordinator would monitor the patient visits and tasks as an additional check that shared care was being provided and to review the program.
The PCP care planning system would provide a workaround solution to the barrier of sharing clinical information from a state-based health service to external health providers. The PCP would upload the clinical information while the cancer specialist would create the individualised care plan. A disadvantage was that it would not integrate with the cancer service information systems but could have the capacity to in the future.