Patient and public involvement

Over the course of the programme we have followed our plan for PPI at three levels, as originally proposed:

• through our dedicated C-CHANGE PPI group
• through patient/carer participation in the Programme Steering Committee
• through engagement with a wider Consumer Panel at the Cicely Saunders Institute, King’s College London, where the research team is based.

The C-CHANGE Patient and Public Involvement Group

Throughout the programme, we have been strongly supported by a committed and active C-CHANGE PPI Group. Initially this consisted of four members, then expanded to seven members from 2015. The Group supported the work of the programme in a variety of ways: through regular face-to-face quarterly meetings; through Skype (Microsoft Corporation, Redmond, WA, USA) and e-mail consultations about specific elements of the work; through contributing to test surveys and interviews prior to data collection from patient participants in our studies; through the attendance of one or two delegated members at Ethics Review meetings; and through the active involvement of the whole group in providing invaluable feedback on the extent to which our work was patient and family centred (or not), and the effectiveness of the programme in delivering relevant evidence.

The PPI group sought to widen and improve its ethnic diversity, and this was addressed by recruiting six new members from diverse ethnic backgrounds from October 2015 onwards. The group changed again in the final year of the programme when two members chose to leave owing to deteriorating health. The group was kept informed of the programme and provided advice through regular contact by telephone, e-mail and Skype, and in face-to-face meetings: the Group has been an integral part of the team. There were also numerous individual or smaller group meetings by telephone and Skype, and at home (according to preference and to accommodate those less well). Payment for involvement and related expenses were in accordance with the recommendations of the NIHR.

Engagement with the Consumer Panel

We also worked with a more diverse group, the Consumer Panel (a network of patients, families and the public developed and sustained at the Cicely Saunders Institute; see Brighton et al.95 for further details), which enabled engagement with a wider and more diverse group constituency. The following individuals and organisations especially contributed in this respect: Carolyn Morris and Kirstie Newson (who worked with us on our Dissemination and Engagement Group at the Cicely Saunders Institute); our Macmillan Information & Support Centre (which was located in the Cicely Saunders Institute, provided information and support to patients and public, and hosted several patient/family support groups who were able to contribute); and Hospice UK (London, UK) (a national organisation which supports palliative care providers).

We engaged with the Consumer Panel throughout the programme, largely by phone, Skype and e-mail but also through several smaller face-to-face group meetings (according to need) to discuss issues that emerged. The focus of our work with the Consumer Panel was on considering and discussing individual measures, considering which measures could be used together, how the measures met the priorities and domains of concern of patients/families with advanced illness, how the measures work both individually and together for this population, and how a casemix classification might best support good quality care and reduce inequities in access and care. Through the Consumer Panel we were able to test the training materials for the use of measures, and review and refine participant and other materials for workstreams 3 and 4. The Consumer Panel was kept informed through our quarterly newsletter, although we also met with a number of individuals on the Consumer Panel for specific pieces of work, as the programme required.

Patient participation in the Programme Steering Committee

Mr Jonathan Hope and Mrs Sue Farr (co-leads for PPI) regularly attended the meetings of the C-CHANGE Programme Steering Committee, where they were updated on the programme’s progress, provided feedback from the PPI group, informed the planning of next steps, addressed challenges that arose and helped the committee to better consider patient and family perspectives. We owe them both a great debt for their wisdom, their contributions, their ability to challenge us, and the insight they brought from extensive experience of both serious illness and providing care.

Innovation and evolution in our patient and public involvement and engagement

Patient and public involvement in palliative care is challenging because of the severity of illness and short survival time of those affected (some of our PPI partners, for example, were very seriously ill), the substantial caring demands on families, and the impact of bereavement often experienced. However, we linked to Collaborations for Leadership in Applied Health Research and Care (CLAHRC) South London to help us develop and sustain a sufficient ‘critical mass’ within the C-CHANGE PPI group to support effective PPI engagement over the years of the programme.

In addition to the PPI described above, over the course of the programme we held three PPI workshops across the Cicely Saunders Institute (14/06/2016, 15/11/2016 and 10/04/2017) to improve the quality and relevance of the research and maximise its impact on improving care. Both the C-CHANGE researchers and our PPI C-CHANGE group members were actively involved and engaged in this work. These workshops focused on increasing dialogue and collaboration, listening to our PPI partners, facing challenges, and seeking ideas and solutions together.

Impact of patient and public involvement to date

Involvement in identifying the research topic, prioritising the research questions and preparing the application

Patients and the public contributed to (1) the prioritisation of the research topic and questions, (2) the development of the research design and (3) the preparation of the application. The research topic was identified and prioritised with the involvement of the Consumer Panel of the National Cancer Research Institute collaborative in supportive and palliative care as part of our Programme Development Grant bid. There was universal agreement from our patient and public partners that patient and family needs towards end of life are often poorly matched to resources, leading to inequity and, for some, major gaps in provision.

We made changes to the protocols and ethics submissions as a result of PPI feedback. In addition, we had encouragement from our PPI partners throughout, which was very supportive of the team.

Developing and refining research resources (i.e. participant information sheets and topic guides)

All patient-facing materials within the programme were reviewed, amended and/or written by our PPI group.

In workstream 2, the PPI group recommended that certain groups were represented within the stakeholders’ interviews (e.g. spiritual leads and social workers) to diversify the sample. Workstream 2 was extended to include patient and family stakeholders on the recommendations of our PPI group and with agreement from our Programme Steering Committee. We therefore increased the number of interviews from the planned 40–50 to 65. This allowed us to identify the most important domains for patients and carers across a range of diagnoses and backgrounds and ensure they were captured in workstreams 3 and 4.

We continued to engage with and consult members of our PPI group on the design and data collection for workstreams 3 and 4. This included enlisting support for drafting the questionnaires, developing the interview topic guide and refining our methods for collecting data. The PPI group suggested that we shorten the patient questionnaires to reduce overall research burden and we have had direct discussion on how best to do this.

Modification of research plans

As a consequence of PPI feedback, carer questions were added to workstreams 3 and 4 to further assess the strain or burden for the main family caregiver of caring for their relative. This question was derived from the Zarit Carer Interview.96 The PPI group also suggested that we include a question to measure whether or not the care received is sensitive to religious beliefs and cultural needs, based on their own direct experiences of caring for family members at the end of life. The PPI group encouraged the team to include pre- and post-bereavement written materials for patients, families and carers, especially regarding the needs of bereaved carers.

Secondary analysis on complexity

We were urged to further consider the role of uncertainty in the complexity of care and domains relevant for patients and families. As a result of this dialogue, a secondary analysis was conducted that examined the main priorities and concerns of patients and carers in advanced illness and how uncertainty shaped their experience. This work was published in Palliative Medicine in 2017.78

Dissemination

As a way to disseminate the C-CHANGE project and the PPI work, our PPI group developed a video diary, taking a ‘reflections and responses’ approach. The aim was to capture PPI perspectives on video and enable the research team to consider and respond to the evolution of the research. In total, our PPI group, alongside a C-CHANGE researcher, produced six videos (see Table 12). The process for creating the videos was as follows:

• The PPI group suggested a topic for a video log.
• A PPI member co-wrote a script with a C-CHANGE researcher.
• A PPI member and C-CHANGE researcher edited and refined the script and filmed the video.
• The PPI member and/or group provided feedback on how best to edit the video.

The main topics raised in the videos comprised: (1) identifying different cultural needs, (2) the individual concerns of people with advanced illness, (3) capturing emotional distress, (4) thinking about goal-based outcomes, (5) the experiences of patients alone and (6) the safety of patients and their family members.

Contribution to dissemination documents (i.e. lay summaries and newsletters)

Throughout the course of the programme, we enlisted the help of our PPI members to provide feedback on lay summaries of our published academic papers. In addition, the PPI group contributed to and reviewed quarterly C-CHANGE newsletters that have been circulated to research sites, local community groups and organisations of interest.

Summary

Throughout the programme we attempted to achieve a careful balance between incorporating and reflecting the invaluable insights from our PPI group, which we were very keen to adopt, and yet working within the constraints of our existing timelines and resources. The Programme Steering Committee was very helpful in advising on this and we believe we successfully achieved this balance.