Looking backwards and moving forwards: the future of health

consumer participation in SADr Anne Johnson

18th November 2009

HCA did an evaluation of the first 12 months after incorporation in 2003.

Purpose was to contribute to ◦ Identifying HCA’s achievements during the first

year◦ Identifying the limitations to progress.◦ The ongoing operational development of HCA.

The report was a political document in that it exposed delays in funding arrangements and over reliance on voluntary commitment of health consumers.

Did you know?

Recognition that HCA represents health consumers.

HCA seen as a valid, valuable and energetic consumer voice.

Coordination of consumer voice and action. A vehicle for participation into policy and

decision-making forums. Individual benefit to consumers through access

to information and networks. Provision of forums for debate and discussion. An opportunity to build consumer capacity.

Benefits and Achievements

Who is a consumer? Who does HCA represent? Does HCA represent consumers or do they

provide a consumer perspective?

Areas requiring additional attention

Small leadership group. Reliance on small active volunteer effort by members was not sustainable.

What organisational structure, stakeholder consultation processes and Management Committee membership and configuration can best support HCA aims?

Areas requiring additional attention continued

HCA is in limbo with important decisions and development of organisational capacity pending the outcome of delayed funding discussions.

Areas requiring additional attention continued

What have been HCA’s main achievements? What can HCA celebrate?

What have been the main barriers to achieving strategic goals?

Have there been any key events that have made a significant difference to strengthening consumer participation in SA?

What improvements need to be made? e.g. Within HCA, Dept of Health, health services (public and private), NGO’s, and health consumers.

Who have been HCA’s main supporters? Why? Who have been HCA’s main knockers? Why?

6 years on what would be the key findings for HCA?

SA Health policy initiatives◦ Consumer Participation Framework 2003

◦ No evaluation included Consumer and Community Participation Policy Directive, SA Health 2009

◦ 3.11 Evaluation included in Consumer and Community Participation Guideline, SA Health 2009

◦ Consumer Advisory Groups◦ ◦ Health Advisory Councils

Very little evaluation has been done of consumer participation in SA by SA Health

Metropolitan Domiciliary Care SA 2006 and 2007

SHine 2005 and 2007

Other health services

Very little evaluation has been done of consumer participation in SA by individual health services

Why so little attention to evaluation?

= Don’t value it

Evaluation – what does it mean? Evaluation is the process by which we

decide the worth or value of something.

Evaluation is a judgement about something.

Different groups may evaluate programs differently with different outcomes and conclusions (e.g. CHF and IVF clinics and Scientists involved in IVF).

It is a commitment to good practice. Involves two processes –

◦ (1) observation and measurement

◦ (2) comparison of what you observe with some

criterion or standard of what you would consider an indication of good performance.

There is no right or wrong way to evaluate something (be it policy or framework, organisation, program, activity)

Evaluation – what does it mean?

Consider the following:Why it is being done and how will the results be

used?What sort of questions is your evaluation is trying

to answer?What type of data is required by the people who

will use the evaluation to make decisions?What is the most appropriate time to do the

evaluation?What is the time frame for the evaluation?How much money is available?

Evaluation checklist

Who will do, and manage, the evaluation? What is the skill level of the people involved? How will you attend to the ethical issues of

confidentiality and respect? How will the analysis and reporting will be

done? Are there particular requirements of

funders/organisations/consumers? What are the political implications of how and

when and evaluation is conducted?

Evaluation checklist

Community participation is about people and getting the right strategies, processes, and systems in place to ensure it is respectful and effective.

It is not neat and tidy. Even planned change is not necessarily

predictable.

Conclusions

If we don’t evaluate:◦ We won’t value what we have achieved and be

able to celebrate it and build on it.◦ We won’t learn from our past, and can repeat the

same mistakes over and over again. This is a waste of time and energy.

◦ We can’t share the wisdom of our experiences.◦ We can have a distorted memory of what has

occurred.

Conclusions

What have been the key events that have been catalysts for strengthening consumer participation in SA in the past decade that we can build upon?

What has worked well for consumers to enable them to participate? Why?

Future of Consumer Participation in SA?

What hasn’t worked well for consumers? Why?

What have been the main barriers to strengthening consumer participation in SA?

What improvements need to be made? e.g. Within HCA, Dept of Health, health services (public and private), NGO’s health consumers.

Future of Consumer Participation in SA?

With appropriate evaluation, you can look backwards and learn, and then move forwards with a lot more wisdom and confidence.

Thank you.