There's increasing recognition of the importance of involving patients and the public in decision making about health services and a growing body of relevant research. In March 2023, we published a new qualitative evidence synthesis which brings some of this research together. It used co-production and, in this podcast Rachel Plachcinski, an independent Parent, Patient and Public Involvement Consultant and member of Cochrane's Consumer Network Executive, speaks with two of the authors, Bronwen Merner and Rebecca Ryan, from La Trobe University in Melbourne, Australia and the Cochrane Consumers and Communication Group about the review and its findings.
Mike: Hello, I'm Mike Clarke, podcast editor for the Cochrane Library. There's increasing recognition of the importance of involving patients and the public in decision making about health services and a growing body of relevant research. In March 2023, we published a new qualitative evidence synthesis which brings some of this research together. It used co-production and, in this podcast Rachel Plachcinski, an independent Parent, Patient and Public Involvement Consultant and member of Cochrane's Consumer Network Executive, speaks with two of the authors, Bronwen Merner and Rebecca Ryan, from La Trobe University in Melbourne, Australia and the Cochrane Consumers and Communication Group about the review and its findings.
Rachel: Hello Bronwen and Rebecca. I was really pleased to hear this review was being done, and it's great to have you join us for this podcast. First of all, Rebecca tell us what the review covered and how it was carried out.
Rebecca: Hello Rachel. The review explores consumers and health providers' perceptions and experiences of partnering in health service committees to plan, deliver and evaluate services.
The broad topic was identified as a priority in Cochrane Consumer and Communication's priority-setting process in 2016, and we co-produced it with an 18-member Australian stakeholder panel including consumers, health providers and policymakers. This process of co-production meant that the panel was involved in all stages of the review including topic selection and protocol development, checking studies for eligibility, data analysis, writing the review and developing best practice principles.
Rachel: Turning to Bronwen, what are the main findings and how confident are you in them?
Bronwen: The review had nineteen findings, many of which were well-supported by a range of studies. So, we are confident most of the findings won't change a lot with more research.
Overall, the findings, which are based on a total sample of 33 qualitative studies that were done over nearly two decades, from 2000 to 2018, show that successful partnering with consumers requires health providers to continually reflect and address power imbalances that may constrain consumers' participation. Such imbalances may be particularly acute in recruitment procedures, meeting structure and content and decision-making processes.
Unpicking this, some of our specific findings are that:
- consumer recruitment to committees occurred in different ways and consumers managed the recruitment process in only a minority of studies
- recruiting a range of consumers who were reflective of the clinic's demographic population was considered desirable, particularly by health providers
- some health providers felt that individual consumers' experiences were not generalisable to the broader population whereas consumers felt it could be problematic to aim to represent a broad range of community views
- partnerships were facilitated by positive relationships between committee members in areas such as trust, accountability and shared values
Rachel: Tell us about best practice in involving consumers in this work. What really helped people to contribute?
Bronwen: Yes, there were several of these as well, including:
- using skilled facilitators, moderators or consumer coordinators
- training consumers about role expectations and meeting processes
- training health providers in consumer engagement
- providing consumer-only spaces and less formal meeting structures
- increasing the proportion of consumers on committees
- providing opportunities for consumers to shape their role and contribute their own priorities, helping them to bring about tangible changes in the planning, delivery and evaluation of health services
Rachel: Were there any particular barriers to consumer involvement?
Bronwen: Yes, several. We found that consumer involvement could be constrained by:
- lack of government and organisational support for consumer involvement
- lack of clarity about the consumer role on the committee
- formal meeting processes, such as making motions and voting
- lack of opportunity for the consumers to discuss their own priorities
- feeling intimidated by health providers' technical knowledge and professional status
- lack of decision-making power
- lack of involvement in setting the agenda for the meeting
- feeling their expertise was not valued by other committee members
Rachel: Were any of these findings a surprise to you? Did they fit with your experiences of involving consumers? And what did stakeholder panel members think?
Bronwen: Yes, as researchers, some of the findings were surprising and caused us to reflect critically on our own involvement processes. We were very fortunate to be co-producing the review with a stakeholder panel of consumers, health providers and policymakers, so we could implement knowledge gained from the review directly into our co-production processes. For example, when we started the review, we wanted to ensure all stakeholder panel members felt their contributions were "equal", so we assumed that if we mixed everyone together in our panel meetings, rather than holding separate meetings for particular stakeholder groups (including consumers), this would foster greater feelings of equality in the group. However, as the findings of the review emerged, and in discussion with our consumer panel members, we learnt that being in the same room as policymakers and health providers could be daunting for some consumers and in fact, could restrict rather than facilitate their involvement. We also learnt that meeting separately as a consumer group could help consumers feel more supported to present their views. So, we adapted subsequent meetings to provide space for consumers to discuss their ideas as a group separately before feeding back to other members of the panel. This is only one of many changes we would make in future. We are aiming to draft an article about our experiences co-producing this review so that others can learn from our experiences.
On the other hand, the stakeholder panel had had a lot of lived experience of involvement in health service committees, including as consumer representatives, health practitioners, patient engagement officers or policymakers sitting on committees. So I think a lot of the results resonated more with them. That said, some panel members were surprised that "providing training about consumer engagement for health providers" was not a more prominent theme because they felt this was often lacking in health services. They were also surprised that more studies did not address how to sustain consumer involvement over time.
Rachel: Rebecca, there's clearly a lot of information in the review, have you been able to distil it down into key messages for people trying to involve consumers in committees that would plan, deliver and evaluate health services?
Rebecca: Yes, by collaborating with the stakeholder panel, we've developed a set of best practice principles that seek to improve consumer and health provider experiences of partnering in committees. These principles aim to move the review findings closer to the point where they could be put into practice, and we'd like to see them evaluated in future research. The principles cover the following key areas: leadership and health service culture, equity and diversity, mutual respect, shared agendas and decision-making, influence and sustainability. Within each key area, we provide examples of best practice derived from the findings of the review. The principles are included in the review which is available on the Cochrane Library.
Rachel: What types of research are still needed in this area?
Rebecca: Well, now that we have developed the best practice principles, it would be useful to have randomised trials to assess if they are effective in improving committee partnerships, including demonstrating an impact on patients' day-to-day care. But also research is needed about how to implement the principles into practice, given the research to practice gap, and see how best to get them into use.
Rachel: Was it possible to get any sense of differences in emphasis or experience between different areas of health care?
Rebecca: Because we used a method called thematic synthesis to do the review, this focused on finding commonalities across different areas of health care, rather than looking for differences specifically. Although this means we don't have a sense of the differences, the advantage is that the findings and the best practice principles aim to provide guidance on partnering, irrespective of the setting. Also, because the results were drawn from a wide range of geographical contexts (including low- and middle-income countries) and settings (including primary care and hospital, specialist and generalist facilities) they should be applicable very widely across health care.
Rachel: Bronwen, sticking with that broad view, it feels as though barriers to consumer involvement have been repeated ad nauseum for years now. Did you get a sense that this is an area that is improving and that there is more attention to facilitating consumer involvement? Are there still areas in need of improvement? And did any of the studies in the review address the question of funding for co-production?
Bronwen: The review shows many factors can affect partnerships, both positively and negatively, so there is a lot of scope for improvement. Strong consumer involvement starts from the top – so in countries where governments and organisations are becoming more supportive of consumer involvement, through their policies and funding, our review suggests that consumer involvement should improve with these supports. To answer your question specifically about funding, we found that inadequate financial support for partnerships could result in negative impacts on consumer involvement, including limiting the implementation of consumer participation activities in health services, restricting the ability of partnerships to make autonomous and/or long-term decisions, as well as impacting on the payment of consumer members and reimbursement for their expenses (which we know can be important for facilitating equity and diversity in consumer participation).
Even with all of this knowledge, unfortunately, there are still gaps in implementing policy into practice, and also gaps in implementing research into practice and so these improvements will by no means be uniform across countries and health systems. That said, understanding from a strong evidence base what can positively influence involvement, and what hinders it, is really key to being able to improve involvement in the longer term.
This review is not the end of the story: it gives us a comprehensive set of findings which can help us to plan how to make improvements in future.
We are also very keen to learn about the key facilitators and barriers to translating the knowledge we have gained from our review into practice. We are grateful to have received a small grant from La Trobe University to co-design a plan to implement the best practice principles for partnering (developed in this review) into health services. Working with consumer representatives, health practitioners, patient engagement officers and policymakers, we aim to establish the most effective strategies for translating the principles into practice. So, watch this space!
Rachel: To sum up, in a sentence or two, what would you say are the tangible benefits of co-production when planning, delivering and evaluating services, in terms of improved patient care.
Bronwen: This is a tricky question, and unfortunately, it's not really possible to answer it in just a couple of sentences. The qualitative methods in our review meant we explored the perceived benefits of partnering, rather than the actual benefits. That said, the perceived benefits do give us some clues about how partnering can impact on people in their day-to-day care. For example, partnerships were able to deliver important gains like the provision of more culturally sensitive services, securing "after hours care" for patients, improved patient resources, and better design of the physical space of health service buildings. So, these could all have a direct impact on individual patients and the care that they ultimately receive.
Rebecca: However, to measure how a patient's day to day care improved as a result of a partnership would require you to evaluate the comparative effects of care delivered with and without consumer partnership - for example in planning services for a particular group of people, like patients with cancer. This sort of study would require careful planning of outcomes to be measured to make sense of how the partnering might lead to improvements in patient care and related outcomes.
Related to this, alongside the review we've spoken about, we recently tried to investigate the effectiveness of partnering interventions but we found very few randomised trials, and even in the trials that were done, the partnership approach was not at all well-reported or measured. This meant it was not possible to work out whether the partnering approach actually impacted on the services that patients receive or their outcomes in meaningful ways.
Rachel: Thanks very much Bronwen and Rebecca. Finally, if people would like to read the full review, including the best practice principles, how can they find it?
Rebecca: Thanks Rachel. The review's available online in the Cochrane Library. If someone goes to Cochrane Library dot com and types in a search for ‘partnering to improve health services' they'll see the link to it.