Health services strive to deliver the best possible quality of care for their clients and consumers. Essential to making this happen is the establishment of a robust framework for continuously evaluating the services being delivered, and for this information to shape ongoing modifications to improve them and drive the development of new services.

Establishing and sustaining such a framework ensures that health services establish whether they are meeting the needs and expectations of their consumers, and those set by health policy and standards.

Incorporating Co-Design into the evaluation and improvement cycle is a critical in order for the process to effectively ensure that the services being provided are both relevant and appropriate for the consumers who are using them. Consumer satisfaction is a core outcome for any health service.

The Plan-Do-Check-Act Framework

Health services in New South Wales often use the Plan-Do-Check-Act cycle to guide their evaluation and improvement process. This involves a continuous cycle of:

  1. Planning a change
  2. Doing it in a small test
  3. Checking its effects
  4. Acting on results

Co-Design involves consumers, carers and health professionals working side-by-side as active participants in every stage of this process.

ACT

CHECK

PLAN

DO

ACT

Based on the experience of the trial consumers and health professionals work together to implement changes across the service.
  1. Consumers and health professionals together develop a plan for the wider implementation of the strategies trialled, based on the outcomes of the Check process.
  2. Consumers and health professionals proceed with the wider implementation of the strategies according to the agreed plan.
  3. Consumers and health professionals monitor and review progress following implementation of the agreed strategies, revising the plan as necessary.

Check

Check with consumers (evaluation) – Did the changes work? What could be better? Did they address the issue satisfactorily for consumers?
  1. Consumers and health professionals together assess the effectiveness of the tested strategies in increasing consumer satisfaction and addressing their needs, using the agreed evaluation tools.
    1. If strategies implemented were successful: move to Act.
    2. If strategies implemented were not successful, explore why:
      • Was there a lack of understanding regarding the core issue or consumers’ needs?
      • Why did the strategy fail to address the issue?
      • Were there barriers to implementation?
      • Are additional strategies also needed to fully address the issue?
  2. Consumers and health professionals revise all strategies as per Plan, re-test as per Do, and re-check as per Check, before moving ahead to Act.

Plan

Consumers and health professionals work together to plan what needs to be changed and decide how to change it.
  1. Consumers drive what needs improving in a service and how it might be developed. Information is gathered to establish consumer priorities for improvement and development by various methods (e.g. questionnaires, focus groups or informal feedback). Consumers and health professionals are both actively involved in shaping feedback tools to ensure they are best able to capture information about consumer experiences and suggestions.
  2. Consumers and health professionals together consider the information and feedback gathered to determine new areas for development (e.g. in working parties or committees).
  3. Consumers and health professionals work together to explore options for making improvements in the identified areas (e.g. in committees or focus groups).
  4. Consumers and health professionals develop plans to trial strategies for improvements in the identified areas.

Do

Consumers and health professionals work together to test and implement the agreed strategies for change
  1. Consumers and health professionals devise mechanisms to assess the effectiveness of the strategies they are going to test, including how feedback and data will be collated.
  2. Consumers work with health professionals to implement the agreed strategies on a small scale.
  3. Consumers and health professionals together monitor and review the trial (e.g. in working parties or committees).

Source: Planning & Quality Unit – May 2000

Consumers’ needs and expectations shift and develop continuously. Health services need to be open to a perpetual process of examination and change.

The Plan-Do-Check-Act cycle is continuous and ongoing. A health service needs to ensure that the right mechanisms are put in place for the ongoing collection of information and feedback from consumers, and for these to be acted upon. Once any change or improvement has been implemented it needs to be repeatedly evaluated to ensure its ongoing effectiveness.

Supporting Consumers as Active Partners

Involving consumers and carers as active partners in the continuous quality improvement cycle may be a new experience to all involved. It is the responsibility of the health service to provide support to ensure that consumers can truly participate as equals throughout.
This may mean:

  • Using different data collection mechanisms to meet people’s different needs.
  • Employing staff members who focus on feedback processes. For example, a liaison staff member who can answer any questions or help consumers to complete a questionnaire;
  • Providing training to consumers or carers who sit on committees or undertake specific tasks;
  • Ensuring that any reports and documents for consideration are disseminated with ample time for review by consumers or carers as well as health professionals;
  • Ensuring that language used does not include jargon, that any acronyms are spelled out and that definitions are provided for specific terms;
  • Offering payment (or other forms of compensation) to consumers or carers for their time and contribution.

The Angelman Syndrome Clinic has used a range of tools over an extended period of time to gather feedback about their clients’ needs and how the clinic’s services could serve them better. Every interaction between the clinic and AS families is considered an opportunity for feedback, and no opportunity is wasted.

The clinic pro-actively uses the information collected to rethink, develop and expand on its services to ensure that they remain relevant to the families’ changing needs. The carers and parents of children with AS contribute to all service adaptions and directions for development.

Increasing numbers of individuals with AS first met the AS Clinic as very young children, and are now moving through adolescence and into adulthood. This has brought with it a significant shift in the needs of AS families and the particular issues that they wish to see addressed.

This became obvious over time due to:

  • Guidance and direction from the Angelman Syndrome Association about changing priorities, such as deteriorating mobility;
  • Questions from parents via email and phone, and at social gatherings, seminars etc.
  • Monitoring the changing nature of the medical issues coming to the fore in individual clinical presentations;
  • Comments from parents in individual clinic sessions about new stressors arising for them and suggestions as to how they might be better supported;
  • Reviewing data collected via questionnaires and collated in the clinic’s central database;
  • Conducting formal focus groups to gather information about priority issues.

The AS Clinic has worked with the ASA and with individual families, and sought their input and advice on how they might address their shifting needs by:

  • Facilitating focus groups at conferences to address this question specifically;
  • Involving a carer advocate with lived experience of AS to participate in designing new services and reshaping existing services;
  • Trialling new ways of working with families (e.g. school-based transition clinics);
  • Pursuing and trialling families’ suggestions for new ways of providing support as these come up (e.g. dedicated AS Clinic email address with two-day response time);

As a direct result of the Plan-Do-Check-Act process in action, the AS Clinic and its clients have determined that the clinic will:

  • Reduce emphasis on (and resources directed towards) diagnosis and genetic counselling;
  • Improve on supporting families transitioning from paediatric to adult services (e.g. collaborating with case managers and transition coordinators to tailor integrated transition plans);
  • Increase the range of adult medical speciality services that the clinic co-ordinates access to and referrals to;
  • Undertake research to fill an identified gap – there have been few longitudinal studies about the natural ageing process for individuals with AS and how their condition changes with age;
  • Pursue the possibility of partnerships with group homes and other supported residential care facilities.
  • An evaluation and improvement framework has been developed by the NSW Consumer Advisory Group – Mental Health (supported by New South Wales Health). The Mental Health Consumer Perception and Experiences of Services (MH-CoPES) Framework was developed specifically to involve mental health service consumers in the quality improvement process to ensure that services were driven by the things that are important to them. The process of its development and/or the Framework itself can be readily adapted for use by other health and disability services. Find out more at the NSW CAG website.