Implementing shared decision-making in UK: Progress 2017-2022.

Shared decision making has been on the policy agenda in the UK for at least twelve years, but it lacked a comprehensive approach to delivery. That has changed over the past five years, and we can now see significant progress across all aspects of a comprehensive approach, including leadership at policy, professional and patient levels; infrastructure developments, including the provision of training, tools and campaigns; and practice improvements, such as demonstrations, measurement and coordination. All these initiatives were necessary, but the last, central coordination, would appear to be key to success.

ePRO-based individual follow-up care for women treated for early breast cancer: impact on service use and workflows.

PURPOSE: The increasing population of breast cancer survivors highlights the need to (re)consider how we utilize available services for survivorship care in oncology clinics. Electronic Patient-Reported Outcomes (ePROs) can be used to identify patients' individual care needs and triage them to the right services. We examined the impact on service use, workflow and workload following the introduction of an ePRO-based individual follow-up (PIFU) for women treated for early breast cancer. METHODS: A multi-method approach was used. In a pilot randomized controlled trial, the use of consultations, telephone calls, and specialist referrals were systematically recorded. Comparison was done between PIFU and standard follow-up care (SFU). Focus group interviews with nurse navigators evaluated the impact on workflow and workload qualitatively. RESULTS: The 64 women randomized to attend SFU used a mean of 3.8 (95% CI: 3.5-4.1) planned consultations during the 2-year study period compared with a mean of 1.9 consultations (95% CI: 1.4-2.4) for the 60 women randomized to PIFU (P < 0.001). Urgent appointments were more frequent in SFU (mean of 0.47 vs 0.22 per patient, P = 0.03). No statistically significant differences were observed in the use of telephone calls and specialist referrals. The nurse navigators did not experience an increase in their workload, but implementation of PIFU may require a re-structured workflow. CONCLUSIONS: The ePRO-based individual follow-up could change organization of care and re-allocate services for those in need of it. IMPLICATIONS FOR CANCER SURVIVORS: ePRO-based individual follow-up could potentially ensure more time for those most in need of face-to-face care.

What Works in Implementing Patient Decision Aids in Routine Clinical Settings? A Rapid Realist Review and Update from the International Patient Decision Aid Standards Collaboration.

BACKGROUND: Decades of effectiveness research has established the benefits of using patient decision aids (PtDAs), yet broad clinical implementation has not yet occurred. Evidence to date is mainly derived from highly controlled settings; if clinicians and health care organizations are expected to embed PtDAs as a means to support person-centered care, we need to better understand what this might look like outside of a research setting. AIM: This review was conducted in response to the IPDAS Collaboration's evidence update process, which informs their published standards for PtDA quality and effectiveness. The aim was to develop context-specific program theories that explain why and how PtDAs are successfully implemented in routine healthcare settings. METHODS: Rapid realist review methodology was used to identify articles that could contribute to theory development. We engaged key experts and stakeholders to identify key sources; this was supplemented by electronic database (Medline and CINAHL), gray literature, and forward/backward search strategies. Initial theories were refined to develop realist context-mechanism-outcome configurations, and these were mapped to the Consolidated Framework for Implementation Research. RESULTS: We developed 8 refined theories, using data from 23 implementation studies (29 articles), to describe the mechanisms by which PtDAs become successfully implemented into routine clinical settings. Recommended implementation strategies derived from the program theory include 1) co-production of PtDA content and processes (or local adaptation), 2) training the entire team, 3) preparing and prompting patients to engage, 4) senior-level buy-in, and 5) measuring to improve. CONCLUSIONS: We recommend key strategies that organizations and individuals intending to embed PtDAs routinely can use as a practical guide. Further work is needed to understand the importance of context in the success of different implementation studies.

Qualitative and quantitative approach to assess of the potential for automating administrative tasks in general practice.

OBJECTIVE: To identify the extent to which administrative tasks carried out by primary care staff in general practice could be automated. DESIGN: A mixed-method design including ethnographic case studies, focus groups, interviews and an online survey of automation experts. SETTING: Three urban and three rural general practice health centres in England selected for differences in list size and organisational characteristics. PARTICIPANTS: Observation and interviews with 65 primary care staff in the following job roles: administrator, manager, general practitioner, healthcare assistant, nurse practitioner, pharmacy technician, phlebotomist, practice nurse, pharmacist, prescription clerk, receptionist, scanning clerk, secretary and medical summariser; together with a survey of 156 experts in automation technologies. METHODS: 330 hours of ethnographic observation and documentation of administrative tasks carried out by staff in each of the above job roles, followed by coding and classification; semistructured interviews with 10 general practitioners and 6 staff focus groups. The online survey of machine learning, artificial intelligence and robotics experts was analysed using an ordinal Gaussian process prediction model to estimate the automatability of the observed tasks. RESULTS: The model predicted that roughly 44% of administrative tasks carried out by staff in general practice are 'mostly' or 'completely' automatable using currently available technology. Discussions with practice staff underlined the need for a cautious approach to implementation. CONCLUSIONS: There is considerable potential to extend the use of automation in primary care, but this will require careful implementation and ongoing evaluation.

Use of PROM during follow-up of patients with ovarian cancer: the PROMova study protocol.

BACKGROUND: There is a paucity of high-level evidence on the optimal follow-up of patients with ovarian cancer after primary treatment. A debate is ongoing on the extent to which follow-up should consider patient preferences and patient-reported outcome measures. Incorporation of patient-reported outcome measures supports the dialog between patient and clinician and may be instrumental in symptom monitoring and detection of underlying issues, especially when used actively during the clinical consultation. PRIMARY OBJECTIVE AND ENDPOINT: The PROMova study aims to assess whether proactive use of patient-reported outcome measures during follow-up care increases patient involvement as perceived by the patient compared with standard care. Another objective is to measure satisfaction with the care provided. STUDY HYPOTHESIS: It is hypothesized that proactive use of patient-reported outcome measures during the clinical encounter will improve patients' experience of involvement in follow-up care. TRIAL DESIGN: PROMova is a multi-center, observational cohort study collecting data from eight departments in Denmark. Five departments use the patient-reported outcome measures proactively during the consultation and three provide standard care. Participants are followed up with patient-reported outcome measures for up to 3 years. The patient-reported outcome measures package comprises EORTC QLQ-C30, EORTC QLQ-OV28, a questionnaire screening tool for recurrence, CollaboRATE, and selected questions from the Patient Experience Questionnaire. MAJOR INCLUSION/EXCLUSION CRITERIA: Patients older than 18 years diagnosed with ovarian, fallopian tube, or primary peritoneal cancer are eligible when entering the follow-up program after primary treatment. Participants must be able to speak and read Danish. SAMPLE SIZE: 223 patients with ovarian cancer. ESTIMATED DATES FOR COMPLETING ACCRUAL AND PRESENTING RESULTS: The protocol closed for enrollment in 2019. Publication of final results is expected in spring 2022. TRIAL REGISTRATION: PROMova was registered with ClinicalTrials.gov November 2016 Identifier: NCT02916875.

Satisfaction with care and adherence to treatment when using patient reported outcomes to individualize follow-up care for women with early breast cancer - a pilot randomized controlled trial.

Background: The population of breast cancer survivors is increasing as a positive consequence of early detection and enhanced treatment. The disease and treatment associated side-effects or late-effects often impact on quality of life and daily life functions during survivorship. This calls for optimization of follow-up care. We aimed to evaluate the patients' satisfaction with the care provided, when using electronic patient reported outcomes (ePROs) to individualize follow-up care in women with early breast cancer receiving adjuvant endocrine therapy.Material and methods: Postmenopausal women treated for hormone receptor positive early breast cancer were included in a pilot randomized controlled trial and randomized to receive standard follow-up care with prescheduled consultations every six months or individualized follow-up care with the active use of ePROs to screen for the need of consultations. ePROs were distributed every third month over a two-year period. Primary outcomes were satisfaction with the assigned follow-up care and unmet needs. Secondary outcomes were use of consultations, adherence to treatment and quality of life.Results: Of the 207 consecutive patients who were potentially eligible for the study, 134 women were enrolled (65%). In total 64 women in standard care and 60 women in individualized care were analyzed. No statistically significant differences were reported in relation to satisfaction, unmet needs, adherence to treatment or quality of life. Women in standard care attended twice as many consultations during the two year follow-up period as women in individualized care; 4.3 (95% CI 3.9-4.7) versus 2.1 (95% CI: 1.6-2.6), p < .001.Conclusion: A significant reduction in consultations was observed for the group attending individualized care without compromising the patients' satisfaction, quality of life or adherence to treatment. For the majority of postmenopausal women treated for early breast cancer, implementation of ePROs to individualize follow-up care was feasible.

Shared decision making when patients consider surgery for lumbar herniated disc: development and test of a patient decision aid.

BACKGROUND: Shared decision making (SDM) is a systematic approach aimed at improving patient involvement in preference-sensitive health care decisions. Choosing between surgical or non-surgical treatment for lumbar disc herniation, can be difficult as the evidence of a superior treatment is unclear, which makes it a preference-sensitive decision. The objectives of this study was therefore to assess the degree of SDM and afterwards to develop and test a patient decision aid (PtDA) to support SDM during the clinical encounter between surgeon and patient, when patients choose between surgical and non-surgical treatment for Lumbar disc herniation (LDH). METHODS: The study was conducted in four steps. 1) Assessment of the extent to which SDM was practiced in the spine clinic. 2) Development of a PtDA to support SDM. 3) Testing its usability and acceptability amongst potential users (patients). 4) Pilot-test of its usability in the clinical setting. RESULTS: Results from our small baseline study (n = 40) showed that between a third and two-thirds of the patients reported not being fully engaged in a shared decision. A pre-designed template (BESLUTNINGSHJÆLPER™) was adapted to support the decision about whether or not to have surgery for LDH. Testing the prototype with patients led to minor refinements. A subsequent pilot test of its usability in a clinical setting achieved positive responses from both patients and clinicians. CONCLUSION: Our baseline study demonstrated that SDM was not universally practiced in the clinic. The PtDA we have developed was rated as acceptable and usable by both patients and clinicians for helping those with LDH choose between surgical or non- surgical treatment. This tool now requires further testing to assess its effectiveness.

Proactive use of PROMs in ovarian cancer survivors: a systematic review.

INTRODUCTION: The use of patient reported outcome measures (PROMs) has increased during the past decade, and the focus on how to use them has resulted in a more proactive application. Studies have shown that proactive use of PROMs during treatment improves patient-clinician communication, leads to better symptom management and may prolong survival among advanced cancer patients. Ovarian cancer is a serious disease in which the majority of patients experience recurrence during the follow-up period and suffer from a number of severe symptoms from underlying disease. This systematic review was conducted to assess the evidence on the proactive use of PROMs as a dialogue tool during follow-up of ovarian cancer patients. RESULTS: The following databases were searched for relevant literature; PubMed, EMBASE, CINAHL, and the Cochrane Library. The search was conducted in April 2019 without any filters or limits. A total of 643 publications were identified, and 48 studies were found to be potentially eligible. Of the 48 papers, none met the final inclusion criterion of using PROMs proactively as a dialogue tool for ovarian cancer patients during follow-up. CONCLUSION: Studies have shown that PROMs can identify otherwise undetected symptoms. Using PROMs proactively during the consultation has been shown to improve symptom management for patients with some other types of cancer. However, we found no studies that had examined the proactive use of PROMs during follow-up of ovarian cancer patients. Future studies should evaluate if the proactive use of PROMs could facilitate a more individualized and more effective follow-up program tailored to the ovarian cancer patient's needs and preferences.

The Future of Health Care: Protocol for Measuring the Potential of Task Automation Grounded in the National Health Service Primary Care System.

BACKGROUND: Recent advances in technology have reopened an old debate on which sectors will be most affected by automation. This debate is ill served by the current lack of detailed data on the exact capabilities of new machines and how they are influencing work. Although recent debates about the future of jobs have focused on whether they are at risk of automation, our research focuses on a more fine-grained and transparent method to model task automation and specifically focus on the domain of primary health care. OBJECTIVE: This protocol describes a new wave of intelligent automation, focusing on the specific pressures faced by primary care within the National Health Service (NHS) in England. These pressures include staff shortages, increased service demand, and reduced budgets. A critical part of the problem we propose to address is a formal framework for measuring automation, which is lacking in the literature. The health care domain offers a further challenge in measuring automation because of a general lack of detailed, health care-specific occupation and task observational data to provide good insights on this misunderstood topic. METHODS: This project utilizes a multimethod research design comprising two phases: a qualitative observational phase and a quantitative data analysis phase; each phase addresses one of the two project aims. Our first aim is to address the lack of task data by collecting high-quality, detailed task-specific data from UK primary health care practices. This phase employs ethnography, observation, interviews, document collection, and focus groups. The second aim is to propose a formal machine learning approach for probabilistic inference of task- and occupation-level automation to gain valuable insights. Sensitivity analysis is then used to present the occupational attributes that increase/decrease automatability most, which is vital for establishing effective training and staffing policy. RESULTS: Our detailed fieldwork includes observing and documenting 16 unique occupations and performing over 130 tasks across six primary care centers. Preliminary results on the current state of automation and the potential for further automation in primary care are discussed. Our initial findings are that tasks are often shared amongst staff and can include convoluted workflows that often vary between practices. The single most used technology in primary health care is the desktop computer. In addition, we have conducted a large-scale survey of over 156 machine learning and robotics experts to assess what tasks are susceptible to automation, given the state-of-the-art technology available today. Further results and detailed analysis will be published toward the end of the project in early 2019. CONCLUSIONS: We believe our analysis will identify many tasks currently performed manually within primary care that can be automated using currently available technology. Given the proper implementation of such automating technologies, we expect considerable staff resources to be saved, alleviating some pressures on the NHS primary care staff. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11232.

Are patient-reported outcomes useful in post-treatment follow-up care for women with early breast cancer? A scoping review.

BACKGROUND: Patient-reported outcomes (PROs) are frequently used to evaluate treatment effects and quality of life in clinical trials. The application of PROs in breast cancer clinics is evolving but their use to generate real-time information for use in follow-up care is uncommon. This proactive use might help to shift healthcare delivery toward a more patient-centered approach by acting as a screening tool for unmet needs or a dialogue tool to discuss issues proposed by the patient. AIMS: This review aims to determine the effects and feasibility of using PROs proactively during follow-up care in early breast cancer. MATERIALS AND METHODS: A systematic search was conducted in January 2019 in PubMed, Cochrane Library, Embase, and CINAHL. Studies that exclusively concerned women treated for early breast cancer where PROs were used as a proactive tool during follow-up were included. RESULTS: The search revealed a total of 653 records and four eligible studies were identified; three of which concerned the use of PROs both as a screening tool and as a dialogue tool, and one study in which PROs were used solely as a screening tool. The studies explored the feasibility of collecting and integrating PROs in the clinic and their ability to detect otherwise unrecognized problems. All of the included studies were prone to bias, but they point to potential benefits in respect of better symptom management in follow-up care. CONCLUSION: Our search identified a small number of low to moderate quality studies of the proactive use of PROs during follow-up after treatment for early stage breast cancer. The limited evidence available suggests that PROs may be useful for providing a more complete picture of the patient's symptoms and problems, possibly leading to improvements in symptom management.

Factors Affecting Patient Decision-making on Surgery for Lumbar Disc Herniation.

STUDY DESIGN: Qualitative research using semistructured interviews. OBJECTIVE: To explore, from a patient perspective, factors influencing a patient's decision-making process and the decision to have surgery for lumbar disc herniation. SUMMARY OF BACKGROUND DATA: Since strong evidence favoring surgical over nonsurgical treatment is lacking and firm guidelines regarding the optimal timing of surgery are not available, it is essential to involve patients in the decision-making process. Thus the elements that might affect the decision-making process and the decision to have surgery must be identified. METHODS: Using a hermeneutic-phenomenological approach, 14 patients who were referred for primary surgery for lumbar disc herniation were interviewed. Interviews were transcribed and analyzed using a meaning-condensation method to identify themes influencing a patient's decision-making process and the decision to have surgery for lumbar disc herniation. RESULTS: Four main themes that could directly or indirectly influence the patients' decision-making process were identified: A) Patient information: patients' conceptions about treatment were not always based on sufficient information; B) Accelerated workflows: some patients needed time to process the information given, which may be limited due to accelerated workflows; C) Power imbalance: patients can be reluctant to challenge the system, as they do not want to offend, which can be seen as a power imbalance between clinicians and patients; and D) Personal past experience: experience, about treatment options from, i.e., close relatives, can impact patients thoughts about possible treatments. CONCLUSION: Several factors can influence patients' decision-making process and the decision itself: the amount and quality of information received as compared with their preconceived notions, the amount of time given to consider their decision, reluctance to challenge the system and offend the healthcare provider, and past personal experience. Understanding these complex factors will help clinicians to better support patients choosing between surgical and nonsurgical treatment for lumbar herniated disc. LEVEL OF EVIDENCE: 5.

Connecting patient experience, leadership, and the importance of involvement, information, and empathy in the care process.

To improve health outcomes, restore trust, and create a safe and healing environment for patients, the health system needs to shift from being disease, system, and provider focused to being patient centred. Drawing from a patient story, this article focuses on three aspects of the care process that have a significant impact on patient experience: involvement in care, information about treatment and care, and empathy and respect. It will also provide recommendations for leaders in how to become more patient centred and aligned to the LEADS competency framework.