Developing a digital intervention for cancer survivors: an evidence-, theory- and person-based approach

This paper illustrates a rigorous approach to developing digital interventions using an evidence-, theory- and person-based approach. Intervention planning included a rapid scoping review which identified cancer survivors’ needs, including barriers and facilitators to intervention success. Review evidence (N=49 papers) informed the intervention’s Guiding Principles, theory-based behavioural analysis and logic model. The intervention was optimised based on feedback on a prototype intervention through interviews (N=96) with cancer survivors and focus groups with NHS staff and cancer charity workers (N=31). Interviews with cancer survivors highlighted barriers to engagement, such as concerns about physical activity worsening fatigue. Focus groups highlighted concerns about support appointment length and how to support distressed participants. Feedback informed intervention modifications, to maximise acceptability, feasibility and likelihood of behaviour change. Our systematic method for understanding user views enabled us to anticipate and address important barriers to engagement. This methodology may be useful to others developing digital interventions

Advances in Teaching & Learning Day Abstracts 2005

Proceedings of the Advances in Teaching & Learning Day Regional Conference held at The University of Texas Health Science Center at Houston in 2005

Too Important to Ignore: Leveraging Digital Technology to Improve Chronic Illness Management Among Black Men

Health disparities associated with chronic illness experiences of black men demonstrate widespread, systematic failures to meet an urgent need. Well-established social and behavioral determinants that have led to health disparities among black men include racism, discrimination, and stress. While advocacy work that includes community-engagement and tailoring health promotion strategies have shown local impact, evidence shows the gaps are increasing. We suspect that failure to reduce current disparities may be due to conventional public health interventions and programs; therefore, we submit that innovative interventions, ones that embrace digital technologies and their ability to harness naturally occurring social networks within groups, like black men, have particular importance and deserve attention. This commentary characterizes the current literature on chronic illness among black men as well as health interventions that use digital technology, to build a case for expanding research in this area to reduce the overwhelming burden of chronic illness among black men

Internet interventions for improving psychological well‐being in psycho‐oncology: review and recommendations

Objective Too few cancer patients and survivors receive evidence‐based interventions for mental health symptoms. This review examines the potential for Internet interventions to help fill treatment gaps in psychosocial oncology and presents evidence regarding the likely utility of Internet interventions for cancer patients. Methods The authors examined available literature regarding Internet interventions tailored to cancer patients' mental health needs and reviewed elements of Internet interventions for mental health relevant to advancing psycho‐oncology Internet intervention research. Results Few rigorous studies focusing on mental health of cancer patients have been conducted online. A growing body of evidence supports the efficacy, accessibility, and acceptability of mental health Internet interventions for a variety of general and medical patient populations. The authors present recommendations and guidelines to assist researchers in developing, testing, and disseminating Internet interventions for cancer patients and survivors, to manage and improve their mental health. Issues unique to Internet interventions—including intervention structure, customization, provider interaction, and privacy and confidentiality issues—are discussed. These guidelines are offered as a step toward establishing a set of “best practices” for Internet interventions in psycho‐oncology and to generate further discussion regarding the goals of such interventions and their place in cancer care. Conclusions Internet interventions have the potential to fill an important gap in quality cancer care by augmenting limited available mental health services. These interventions should be developed in a manner consistent with best practices and must be empirically tested and validated. Copyright © 2011 John Wiley & Sons, Ltd.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/93546/1/pon1993.pd

Use of RE-AIM to develop a multi-media facilitation tool for the patient-centered medical home

<p>Abstract</p> <p>Background</p> <p>Much has been written about how the medical home model can enhance patient-centeredness, care continuity, and follow-up, but few comprehensive aids or resources exist to help practices accomplish these aims. The complexity of primary care can overwhelm those concerned with quality improvement.</p> <p>Methods</p> <p>The RE-AIM planning and evaluation model was used to develop a multimedia, multiple-health behavior tool with psychosocial assessment and feedback features to facilitate and guide patient-centered communication, care, and follow-up related to prevention and self-management of the most common adult chronic illnesses seen in primary care.</p> <p>Results</p> <p>The <it>Connection to Health </it>Patient Self-Management System, a web-based patient assessment and support resource, was developed using the RE-AIM factors of reach (<it>e.g</it>., allowing input and output via choice of different modalities), effectiveness (<it>e.g</it>., using evidence-based intervention strategies), adoption (<it>e.g</it>., assistance in integrating the system into practice workflows and permitting customization of the website and feedback materials by practice teams), implementation (<it>e.g</it>., identifying and targeting actionable priority behavioral and psychosocial issues for patients and teams), and maintenance/sustainability (<it>e.g</it>., integration with current National Committee for Quality Assurance recommendations and clinical pathways of care). <it>Connection to Health </it>can work on a variety of input and output platforms, and assesses and provides feedback on multiple health behaviors and multiple chronic conditions frequently managed in adult primary care. As such, it should help to make patient-healthcare team encounters more informed and patient-centered. Formative research with clinicians indicated that the program addressed a number of practical concerns and they appreciated the flexibility and how the <it>Connection to Health </it>program could be customized to their office.</p> <p>Conclusions</p> <p>This primary care practice tool based on an implementation science model has the potential to guide patients to more healthful behaviors and improved self-management of chronic conditions, while fostering effective and efficient communication between patients and their healthcare team. RE-AIM and similar models can help clinicians and media developers create practical products more likely to be widely adopted, feasible in busy medical practices, and able to produce public health impact.</p

Building a flexible CBT model based on structured data for the COPE app

Master's Thesis in InformaticsINF399MAMN-PROGMAMN-IN

Development and evaluation of an integrated digital patient platform during oncology treatment

Background: Patient platforms are seen as promising technologies in an integrated care approach to involve cancer patients in their own health care and to support them in managing their personal health information. However, few digital platforms have been codesigned with patients and caregivers. Objective: To develop, implement, and evaluate the feasibility and applicability of a digital oncology platform (DOP) for patients with cancer. Method: A mixed-method study was used, employing a survey, interviews, and logged data from caregivers and patients. The DOP was designed in cooperation with Information Technology (IT) staff, caregivers, and patients. Results: The DOP was actively used by half of the patients. These active patients were positive about the DOP. Caregivers acknowledged the added value but also indicate that additional workload was involved. Oncology nurse specialists are the users of the platform. General practitioners have indicated their interest in the platform. Conclusion: Thanks to the codesign process, the DOP could be tailored to the expectations of the end users. This study provides insight into which DOP functionalities the patients were interested in and includes further recommendations for implementation

Bridging the Information Gap for Ulcerative Colitis Patients

Nearly all humans, throughout the course of their life, have been diagnosed with everything from a mild cold, to a viral infection, or perhaps a diagnosis of a chronic condition. Upon experiencing symptoms, patients are exposed to a plethora of information. The Internet holds home remedies, for those wary of the doctor\u27s office, or there are advice boards where people share their experiences, trials, and tribulations. In some cases, the doctor is the purveyor of the information and written materials are sent home with the patient dictating the regimen to follow to achieve wellness. However, some patients, particularly ulcerative colitis patients, find themselves without these written materials and without access to health information specifically tailored to their needs. Patients must forage for information while trying to maintain their health after diagnosis. This study explores the holes in the information-sharing process through interviews and surveys, focusing specifically on patients, technical medical writers, and gastroenterologists. The study finds most ulcerative colitis patients do not receive the information they need

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan

Background: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. Method: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). Results: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. Conclusions: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required

Effective, clinically feasible and sustainable: Key design features of psycho-educational and supportive care interventions to promote individualised self-management in cancer care

As the global burden of cancer increases healthcare services will face increasing challenges in meet the complex needs of these patients, their families and the communities in which they live. This raises the question of how to meet patient need where direct clinical contact may be constrained or not readily available. Patients and families require resources and skills to manage their illness outside of the hospital setting within their own communities. Aim. To propose a framework for the development and delivery of psycho-educational and supportive care interventions drawing on theoretical principles of behaviour change and evidence-based interventions, and based on extensive experience in developing and testing complex interventions in oncology. Approach. At the core of this intervention framework are considerations of efficiency: interventions are designed to cater for individuals\u27 unique needs; to place minimal demands on the health system infrastructure and to be rapidly disseminated into usual care if successful. There are seven key features: 1) Targeting cancer type and stage; 2) Tailoring to unique individual needs; 3) Promotion of patient self-management of their disease and treatment side effects; 4) Efficient delivery of the intervention; 5) Training and adherence to protocol; 6) Ensuring the intervention is evidence-based; 7) Confirming stakeholder acceptability of the intervention. Application. A case study of a randomised controlled trial which tested psycho-educational oncology interventions using this framework is presented. These interventions were designed to cater for individuals\u27 unique needs and promote self-management while placing minimal demands on the acute health care setting. Discussion. Innovative ways to realise the potentially major impact that psycho-educational and supportive care interventions can have on psychological morbidity, coping, symptoms and quality of life in serious and chronic illness are needed. This framework, which is driven by theory, evidence, and experience, is designed to ensure that interventions are effective, clinically feasible and sustainable