Development of an interactive, web-based shared care plan to facilitate the follow-up care of colorectal cancer patients

Introduction A shared model of care between cancer services and primary health care is safe and acceptable and can address the increasing demands on cancer services for long term follow-up. This paper describes the challenges developing an interactive shared care plan for colorectal cancer follow-up care. Methods A systematic literature review identified the use, functionality, and impact of web-based shared care plans to support cancer follow-up. Workshops with key stakeholders and consultations with clinicians, consumers and information service providers were conducted to agree on a model of care and technology options to interactively share a care plan. Results Seventeen papers reported five web-based shared care plan systems for cancer follow-up. These systems supported the creation and/or access to view or share the care plans using email or by downloading and printing a copy. The challenges we found included issues with the security, privacy and sharing of patient information between public health services and primary health care and poor integration of clinical information systems. We selected a primary care practitioners’ care planning system as it was interactive, integrated with primary care practitioner’ clinical information systems, was relatively inexpensive and addressed the sharing of clinical information with external clinicians to the public health system. Conclusion seem suitable We plan to evaluate plan

An estimated 17,004 new cases of colorectal cancer were diagnosed in 2018 and in the last 30 years, the five year survival rate for colorectal cancer increased from 48% to 69% in Australia (1). Hospital based Cancer Services continue to provide long term follow-up care for an increasing number of survivors which is not sustainable.
Sharing long term follow-up care using a care plan between cancer specialists, primary care practitioners (PCP) and other care providers can help address this issue. It has been demonstrated that this model of care is safe and acceptable to patients and providers (2)(3)(4)(5)(6)(7), can positively impact on patient attitudes about their health care (8) and does not have different survival outcomes from specialist care (7,9). The majority of cancer patients have PCPs who are involved in their care but have little role in their long term cancer care and surveillance. Improving communication and support between specialists and PCPs may increase the role of PCPs in managing follow-up cancer care (10).
Information and communication systems can support a shared care model by providing care team members with access to the care plan and a vehicle for collaboration (11). A shared care plan (SCP) system needs to be interactive with multiple user access allowing team members to confirm acceptance of their roles, track that tasks are completed, notify when tasks are due and share information and results (12,13).
We aim to pilot a follow-up shared model of care for patients who have completed colorectal cancer treatment, using a semi-integrated and collaborative platform in which patients, specialists, PCPs and other care providers interact and share an agreed care plan.
This paper explores the use of web-based SCP systems to support cancer follow-up care, identifies current technologies to share a care plan between a public cancer service and primary health care providers and the challenges getting an interactive SCP to the pilot stage.

Setting
The St George Cancer Care Centre is situated in a public hospital in the South Eastern Sydney Local Health District in the state of New South Wales, Australia. The PCPs in the area are situated within the Central and Eastern Sydney Primary Health Network boundary that has, as one of its aims, to improve the coordination of care.
There is currently no model of shared care between the cancer service and primary health care. Communication between the cancer service and PCPs is limited and usually one way.
This may include a letter from the medical oncologist to the patient's PCP that summarises the treatment the patient has received. Conversely, the specialist may receive a PCP Care Plan from the PCP to sign and provide information about the patient's care as a requirement for the PCP to claim the item of service.
The cancer service uses a commercial oncology information system (ARIA® Oncology Information System, Varian Medical Systems, Inc.) which is not well integrated with other District information systems. Patient administrative details are held in a Patient Administration System and pathology and radiology results are captured in two other systems.
GPs use various commercial clinical information systems with the two most common systems being used by 94% of the general practices within the area in which the cancer service is located. Most PCPs are enabled to send and receive secure messages, such as sending referrals and receiving discharge summaries, letters from specialists and pathology and diagnostic results, but this is limited as many specialists and allied health clinicians do not use secure messaging (14).

Methods
We undertook a systematic literature review to identify the use, functionality and impact of web-based systems to share a cancer care plan for patients who have completed treatment. We searched Medline, Scopus, Web of Science, Cochraine and CINAHL using the following search terms: "informatics" or "internet" and "care plan" and "cancer".
Eligibility criteria included that the SCP was for follow-up cancer care and that it was partly or fully web-based. All types of research papers and perspectives were accepted.
Conference abstracts and letters to editors were excluded. Papers needed to be from OECD countries and in English.
Duplicates were first removed and papers were screened by title and abstract and the full articles assessed for eligibility by a researcher (JT). All excluded papers were screened by a second researcher (MH). Data was extracted from these papers into a spreadsheet which included author, year, country, a description of the SCP, who created/completed the SCP, study type, results and impacts of the SCP.
The key stakeholders participating in the consultations and workshops included medical oncologists, cancer nurses, GPs, a consumer from the Translational Cancer Research Network, Local Health District representatives and the Primary Health Network (which has responsibility for improving access to primary health services in the district), and a state government eHealth body (eHealth NSW(15) which is responsible for leading information and communication technology policy and programs for state health services).
The two workshops and individual consultations were used to identify a shared model of follow-up cancer care, consider the options for sharing the care plan and to identify and agree on a technology solution for the pilot. Text records and transcripts of the workshops and consultations were aggregated and analysed. An ethics application was not required as this was a service improvement initiative by the South Eastern Sydney Local Health District which met the NSW Health Quality Improvement Ethical Review policy requirements (Quality Improvement and Ethical Review GL2007_20). Workshop participants verbally consented to the workshop being recorded and were aware that their contributions would be used for the project and subsequent publications.

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 Table 1 for a summary of the included papers).
Insert Figure 1: PRISMA search flowchart about here The papers included feasibility and evaluation studies of the SCP technology (16)(17)(18), descriptive studies using SCP data and/or surveys/questionnaires on user satisfaction and participation (19)(20)(21)(22)(23)(24)(25)(26), predictive modelling as to who receives a SCP (27), a review on the adherence, advantages and limitations of cancer SCP (28), a review with a focus on nursing practice(29) and a description of SCP systems that were under development at the time (30,31).
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 (16, 17, 19, 20, 22-25, 27, 29, 32, 33).
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 (16).
Two SCP could be shared via internet login (21,28,31) 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 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 (20) and survivors older than 70 years were more likely to have a primary care provider(32).
Impacts reported in the papers, included that it changed the way survivors participated in health care and improved communication with health providers (19) and it was an effective way to communicate (21).
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 (23,25). In other studies users reported that the SCP was easy to use (17), they were satisfied with the tool (17,19,20,(22)(23)(24)29) and found it useful (18). 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 (27). The workshops and consultations identified the challenges in implementing an interactive SCP, the preferred shared model of care and technology options to support the model.

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Challenges 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 workshops 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 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 2.
Insert Table 2 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(34) 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 We found challenges in sourcing an ehealth system for a pilot that was not costly, relatively easy to access and use and met our requirements. While the pilot solution does not meet all the requirements, it does integrate well with PCP clinical systems and provides a workaround for sharing clinical information between the cancer service and PCPs. The issue of sharing information was also identified by one of the state's Integrated Care demonstration projects which reported that service providers and patients were fearful and unwilling to share information because of privacy concerns.(35) The state health service privacy manual for health information states that health information can be disclosed as long as it is directly related to the primary purpose.(36) It could be considered that follow-up care is related to the primary purpose of cancer treatment.
To address security we arranged for the District to undertake a compliance check of the SCP tool and obtained executive approval to use the system.
The SCP system supports PCPs to claim reimbursement through the use of MBS Items for GP Management Plans and Team Care Arrangements which may assist with PCP participation. We also believe if their patient wants to participate in shared care then PCPs may be more likely to agree, particularly if they are supported with education and ongoing communication/links with the cancer service. We want PCPs to be confident with follow-up care and feel they are part of the cancer care team and for patients to be assured that a shared care arrangement is safe.
In the long term the issue of funding SCP systems will be a challenge given that health providers participating in shared care come from a range of services and jurisdictions.
Who will ultimately pay for it? The PCP care planning system we are piloting takes a percentage of each care plan MBS Item generated. We are covering the cost for this in the pilot but in the long term this would be paid by the PCP. Future iterations of the SCP systems will require funding to integrate with the Local Health District information systems and the platform could possibly be managed within the public health system. In the long term, incentives will be needed to support the uptake of ehealth systems (such as SCP) and to minimize any disproportionate costs and savings across the services(35) involved in shared care. While the SCP system does not address all the functional requirements (such as integration with the cancer service systems) it does offer a solution. We are currently evaluating its feasibility and acceptability. Our aim is to develop a system that is scalable to other cancer types, and other Local Health District services sharing care with primary health care. Using SCP systems that integrate with PCP clinical information systems provides a good starting point for sharing care plans and collaboration between cancer services, PCPs, patients and other care team members. This work will inform other state and national SCP strategies.

Conclusion
Cancer follow-up shared models of care require interactive SCP systems that enable collaboration, coordination and surveillance of care. General practice shared care planning systems seem a suitable option for sharing clinical information between a cancer service and PCPs. We have developed a feasible solution which of course needs further evaluation to determine its impact on work practices both in Cancer Services and primary care and   Shared care plan pathway