Culture change before my eyes

This is a guest blog post from Pip Brennan, executive director of the Health Consumers’ Council of Western Australia, a non-profit patient advocacy organisation (hconc.org.au).

We are grateful to Pip for taking the time to blog after her recent visit to the UK.

When I was doing research for my interview for the position of executive director of the Health Consumers Council in late 2014, I imagined a website where people could write about their health care experiences. This fantasy website would have the magic ingredient for culture change – it would be in the public domain.

And then I stumbled on Patient Opinion (as it is still called in Australia). Immediately, I knew that if I got the job, all I needed to do was to promote Patient Opinion. The hard work of getting a platform built was already done. The job secured, I contacted Patient Opinion Australia’s CEO, Michael Greco and at the Health Consumers’ Council we went about promoting the website any way we could. A widget on our website home page, posters in our workshop space and front counter, and of course the vitally important face to face conversations.

Being a consumer advocate is a journey I started more than 18 years ago as a maternity health consumer, baffled by the over-medicalisation of birth in Australia and the waste and trauma that can result. Advocating included all sorts of activities, from galvanising other mothers, sitting on key committees, catching the waves that come from time to time, such as major policy renewals. All of this is important but it can become an exercise in changing things on paper, rather than changing things for people at the point of care. It can also lead to the same voices (like mine) being endlessly heard when others have important stories to tell.

Stories lead to change, especially when public

Stories lead to change, especially when the story is told and responded to in public. In one of my iterations of patient advocacy I became involved in complaints processes where the outcomes – a change, a graceful listening ear – became lost in the process. A written response in 30 days, which might merely summarise the care episode as derived from the medical notes: the legal truth, but not the whole truth of what happens and matters in healthcare. A response which would meet statutory requirements but have no real value for the patient.

As I look at the Patient Opinion website, its process-busting qualities are obvious. I have shown the website to all sorts of audiences – none has failed to immediately see its simplicity and effectiveness.

In Western Australia, we are fortunate enough to have a government which sees the possibilities and has supported a state-wide subscription for the next three years, confirmed in a recent budget announcement. Well before this, our massive state’s Country Health Services was the first to adopt and embrace the technology. One by one, our other health services have either proactively or cautiously embraced it.

With my alerts set up, I get to see every Western Australian story. Over time, I have watched as the responses to stories have changed. They start at level one: “Thank you for your story. Please contact our Patient Liaison Service on…” This always gets the thumbs down from me.

The next level includes more of a re-telling of the story, rather than noting what will be done to change things if necessary. This also gets my thumbs down.

The next stage is better. An initial “thank you, here are my personal details for you to contact me” when something needs to change. The ongoing dialogue shows everyone how a health service can maturely respond to the need to do things differently. It also allows others to know more about how the health system works. An ongoing dialogue.

Care Opinion offers one of the best opportunities for real and lasting change

What is also wonderful to see is the large number of stories – half of them – where people show their gratitude for the care they’ve received and relevant staff are singled out for praise. Who knows if this feedback would otherwise get to hard-working and caring frontline staff?

The Western Australian experience is off to a promising start and the Health Consumers’ Council is committed to nurturing the state-wide embrace of Patient Opinion. My visit to Care Opinion in the UK allowed me a peek into the future. The merging of Patient Opinion with Care Opinion has great promise, especially as WA is working to support sector reform and vital co-ordination between government and community based services. The work on free text analysis with Member Engagement Services (another UK company) is also exciting.

I believe that from a patient perspective, and from a community services reform perspective, Patient Opinion/Care Opinion offers one of the best opportunities for real and lasting change.