Improving the experience of older people with colorectal and breast cancer in patient-centred cancer care pathways using experience-based co-design.

BACKGROUND: Patient and public involvement (PPI) in quality improvement of oncological care pathways for older patients are rare. OBJECTIVES: Improve the care pathway experience of older cancer patients and explore lessons learned regarding how to engage this vulnerable group. DESIGN: Experience-Based Co-Design. SETTING AND PARTICIPANTS: Older cancer patients, their caregivers and healthcare professionals within colorectal and breast cancer care pathways. INTERVENTIONS: Co-design quality improvement teams. MAIN OUTCOME MEASURES: Colorectal cancer care pathway touchpoints were (a) availability of a contact person during diagnostic, treatment and aftercare phases; (b) collaboration between physicians and different hospital departments; (c) continuous relationship with same physician; (d) respectful treatment; (e) and information transfer with primary care. Breast cancer care pathway touchpoints were (a) comprehensive information package and information provision, (b) care planning based on patient preferences, (c) continuity of patient-professional relationship and (d) specialized care in case of vulnerability. Challenges related to PPI included (a) ability of older cancer patients to be reflective, critical and think at a collective level; (b) gaining support and commitment of professionals; (d) overcoming cultural differences and power inequalities; and (e) involving researchers and facilitators with appropriate expertise and position. CONCLUSION: This multidisciplinary quality improvement project revealed several challenges of PPI with older cancer patients and their caregivers. Research teams themselves need to assume the role of facilitator to enable meaningful PPI of older cancer patients. PATIENT OR PUBLIC CONTRIBUTION: Patient and caregiver representatives and advocates were involved in the design, conduct, analysis, interpretation of the data and preparation of this manuscript.

Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study.

BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated. INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12-18 months, (3) a community of practice, and (4) a qualitative evaluation. RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI. DISCUSSION: A relationship culture appears to be long-lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks. CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship- and task-oriented PPI cultures. PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.

What matters to me - a web-based preference elicitation tool for clients in long-term care: a user-centred design.

BACKGROUND: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of long-term care. METHODS: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. RESULTS: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. CONCLUSION: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool 'What matters to me'. This tool may assist the elicitation of client's preferences in their search for long-term care.

Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research.

BACKGROUND: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. OBJECTIVE: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. METHODS: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. FINDINGS: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. CONCLUSION: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.

"They Are Talking About Me, but Not with Me": A Focus Group Study to Explore the Patient Perspective on Interprofessional Team Meetings in Primary Care.

BACKGROUND: The number of people with multiple chronic conditions receiving primary care services is growing. To deal with their increasingly complex health care demands, professionals from different disciplines need to collaborate. Interprofessional team (IPT) meetings are becoming more popular. Several studies describe important factors related to conducting IPT meetings, mostly from a professional perspective. However, in the light of patient-centeredness, it is valuable to also explore the patients' perspective. OBJECTIVE: The aim was to explore the patients' perspectives regarding IPT meetings in primary care. METHODS: A qualitative study with a focus group design was conducted in the Netherlands. Two focus group meetings took place, for which the same patients were invited. The participants, chronically ill patients with experience on interprofessional collaboration, were recruited through the regional patient association. Participants discussed viewpoints, expectations, and concerns regarding IPT meetings in two rounds, using a focus group protocol and selected video-taped vignettes of team meetings. The first meeting focused on conceptualization and identification of themes related to IPT meetings that are important to patients. The second meeting aimed to gain more in-depth knowledge and understanding of the priorities. Discussions were audio-taped and transcribed verbatim, and analyzed by means of content analysis. RESULTS: The focus group meetings included seven patients. Findings were divided into six key categories, capturing the factors that patients found important regarding IPT meetings: (1) putting the patient at the center, (2) opportunities for patients to participate, (3) appropriate team composition, (4) structured approach, (5) respectful communication, and (6) informing the patient about meeting outcomes. CONCLUSIONS: Patients identified different elements regarding IPT meetings that are important from their perspective. They emphasized the right of patients or their representatives to take part in IPT meetings. Results of this study can be used to develop tools and programs to improve interprofessional collaboration.

The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.

BACKGROUND AND OBJECTIVE: Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. SETTING AND SAMPLE: The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. METHOD: This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. FINDINGS AND CONCLUSION: The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.