What is the biggest barrier to effective participation of consumers in their own care?
An approach in healthcare which excludes the patient/consumer from information, decision making and active involvement in their own care. This approach does not place the patient or consumer at the centre of care and therefore does not recognise the patient as the central member of the care partnership. It is a one-way approach in which consumers are told what is going to be done to them and they are not included in the conversation of their care, therefore they are treated as passive recipients of care. This approach is disempowering and counterproductive in assisting health consumers to obtain an understanding that they can, and have the right to, be active participants in their care and what this involves.
What progress have you seen in consumer participation in the last 10 years?
There is increased recognition and acceptance of the importance of consumers being involved in their own healthcare and also of consumers participating in shaping healthcare services so that services and care meet the needs of the people who use the service.
There is greater understanding that when health consumers have a “self-management” role in the treatment of their disease or medical condition or they are involved in the decision making and process of any aspect of their healthcare, they have increased satisfaction of their care and this can assist them to get better results, than if they are passive recipients of care.
There is an increasing number of committed health consumers, of all ages and backgrounds, representing consumers on a wide range of health committees and projects at national, state and local levels which indicates there is a greater understanding of the value of the consumer perspective in enhancing healthcare by both consumers and those in healthcare. Consumer representation has also been assisted by health consumer groups being active in supporting consumers in their role of broader representation.
“…..the rate of progress in which consumer participation has been implemented in practice across Australia, varies widely within each State and region and health service. It is this variation and inconsistency which is the challenge which must be addressed.”
An increased level of commitment by government, health departments and health services has occurred to ensure consumer participation is embedded in health care policy. In some areas this has provided more focus on implementing consumer participation within all aspects of healthcare. Despite this increased level of recognition, understanding and commitment, the rate of progress in which consumer participation has been implemented in practice across Australia, varies widely within each State and region and health service. It is this variation and inconsistency which is the challenge which must be addressed.
What are the risks for a health service of not collaborating with consumers when planning and delivering their care?
Omitting collaboration with consumers leads to a narrow perspective about how healthcare is provided and how services are planned and delivered. Care and services are inappropriately designed and therefore the function and delivery of the service or care does not meet the needs of the consumer. Being provided either with an ineffective service or not being involved with their care costs the consumer time, resources and can have a detrimental impact to their physical and mental wellbeing, creating additional problems for the consumer and therefore is counterproductive. In addition to the economic costs to health services when service provision is not optimal and consumers are needing care longer than necessary, health services do not improve and are continually propagating inefficient and suboptimal care and services.
What is more important to improving consumer participation, a community shift in thinking or a health industry shift in thinking? Or both?
“More importantly, the health industry must view itself more as a service industry which is part of the community”
Both are important and actually the thinking needs to converge. By this I mean healthcare is part of the community. The concept and benefits of consumer participation must be expanded into the wider community so members of the community are able to have access to information to understand what consumer participation is and what this means for them as individuals and for the broader community. We are living in a time when there is more focus on health and wellbeing and there are more diseases and health conditions that are recognised and in addition there is a higher level of healthcare which includes a range of health services and interventions available to treat them. Therefore most people would have an encounter with healthcare either as an individual or as a family member or carer. Members of the community are interacting with the various components of the health system regularly, in some form or other, whether it’s a dental check up or a visit to the local Council for an influenza immunisation or the General Practitioner for a review of current medications prescribed. So as a community we are very much involved in, and with, healthcare and consumer participation is an important aspect of this involvement. More importantly, the health industry must view itself more as a service industry which is part of the community and therefore also ensures it is meeting the needs of the people is serves. Consumer participation and supporting consumers to participate is a crucial non-negotiable element to ensuring this.
Consumers come from a variety of social and economic backgrounds therefore it is imperative that they are not disadvantaged to participating due to circumstances, such as limited transport options or the need for childcare, and are assisted financially and resourced to enable their full participation. A uniform healthcare culture which values and is committed to consumer participation, which places consumer participation as an integral component of its core business and which has systems in place that support effective and sustainable consumer participation throughout all areas and levels of healthcare needs to be attained. Consumer participation not only needs to be on the radar it needs to be part and parcel of the way services operate to ensure that healthcare is consumer focused and consumer centred.
What is the biggest misconception about participation of consumers in healthcare planning and delivery?
That consumers won’t understand therefore won’t be able to make an effective contribution and also that consumer participation is not appropriate, both of which are quite unfounded. These misconceptions are also significant barriers to consumer participation.
“That unique perspective is also of someone who will not necessarily understand everything and by that very fact will ask a clarifying question which can often cause the whole process to reflect, take stock and then proceed along a much improved path.”
Consumers (representatives) are participating because they are committed to making a difference and take their role very seriously. In association with their commitment they ensure they have a good understanding of the topic or issue of discussion and focus and inform themselves accordingly. Consumers regularly participate in highly technical related committees and projects and are more than able to relate to extremely technical concepts and principles within the context of discussion. Just as other members of the committee or project have areas of expertise, the consumers role is to bring a unique perspective, that of the consumer, to the discussions, deliberations and decisions. That unique perspective is also of someone who will not necessarily understand everything and by that very fact will ask a clarifying question which can often cause the whole process to reflect, take stock and then proceed along a much improved path. It is also often overlooked that consumers have a range of career and life skills they bring with them, draw upon and contribute as they participate.
Consumer participation is appropriate regardless of the aspect and area of health whether its research, policy development, building design, service planning or care delivery. Because people, patients/health consumers, are the key element to and focus of healthcare their input is relevant to any area. So consumer participation is important in any aspect of health and in line with this is the importance of the participation of consumers right from the beginning of an idea as their unique input can steer the next steps and development in a direction that is useful to consumers. This is valuable to ensuring services and programs are aiming to provide what consumers really need not what an arms length administration or committee may think they need.
What do you see as the way of the future for consumer participation?
Consumer participation must be strengthened, it must become the norm not the exception and seen as a valuable component to healthcare. As I referred to earlier, consumer participation must be integral to the way all health services are planned and delivered. Just like patient safety must be core business and its inclusion is part of the culture of healthcare – “the way we do things around here”. Further education is required to ensure that people working within all aspects of healthcare understand the value of consumer participation, are able to know how consumer participation is intrinsic to healthcare and how they can facilitate this. Consumers also require education and support to ensure that they can maintain and sustain the roles required of them in participating. Whilst resources are required to do this it is also about ensuring that consumer participation is at the forefront of everything in health. It is about developing the relationship between all of us, health administrators, health providers, patients, health consumers and consumer representatives, who are contributing and working in differing ways to improve healthcare and make a difference to ensure healthcare is safe, effective and responsive to all health consumers and their needs.
