Is fear of social media stopping health services from listening to patients’ stories?

Michael Greco, a founding Director and the Chief Executive of Patient Opinion Australia, is tweeting for @WePublicHealth this week – so Croakey readers will have the chance to question him directly about the service on Twitter.

To help kickstart the discussions, he answered a few questions below. It would be interesting to know why more health services have not engaged with this innovative opportunity for service improvement.

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Q: Could you tell us the background to Patient Opinion, when it was set up, and why?

Patient Opinion was founded in the United Kingdom in 2005 and since then has grown to be the UK’s leading independent non-profit feedback platform for health services.

Patient Opinion Australia (POA) was established in 2012 and, similar to its UK counterpart, is registered as an independent not-for-profit charitable institution. Both countries are working together to ensure effective and sustainable growth over time.

In the UK, 800+ organisations have registered with Patient Opinion. Currently, there are 50+ organisations registered in Australia, however, this figure is expected to increase substantially in the near future.

Patient Opinion is about honest and meaningful conversations between patients and health services.  We believe that patient stories can help make our health services better, provided those stories are ‘being heard’, not just gathered.

Our aim is to promote constructive dialogue between the public and their health providers that leads to a better service for all.

Many of the stories on Patient Opinion are positive – about 50% – and some not quite positive.

The four key principles that distinguish Patient Opinion are as follows:

• We care about giving the public a voice (not necessarily a survey) where they can “be heard” (not just measured).
• We start with what the story teller (eg. patient, carer, service user, friend, staff) wants to say, not what the health organisation wants to ask them.
• We think we can change care by connecting people (story tellers and providers), not just collecting data
• We do this in a public and transparent way so as to benefit all.

We are not a complaints site (about 2% of our stories are of this nature), nor are we a TripAdvisor.  You can’t compare services on our site as our metrics are about listening, responsiveness and changes to services.

What we are about is making it easy for health staff to listen to the ‘patient voice’ so that patients feel ‘heard’, and productive conversations can take place.

What we want to do is shift the health system from a ‘complaints culture’ to an ‘improvement culture’.  We believe that positive stories contribute as much to organisational learning as does more critical feedback.

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Q: How does it work?

Patient Opinion has three ways in which the public can tell their stories.  The most popular way (95%) is by going on the website and telling your story.  The public can also phone our office or write to us.

This is how it works:

1.     The story teller (eg. patient, service user, family member, carer, relative, staff member, staff writing on behalf of a service user) shares their story on  Patient Opinion

2.     The author of the story receives an automated email from Patient Opinion when their story has been submitted.

3.     Their story goes through a moderation process to ensure it meets our organisation’s policy (95% of stories are published), and to remove any identifiers to maintain the person’s anonymity.

4.     Story gets published on Patient Opinion.

5.     The author of the story receives an automated email when their story is published.

6.     Subscribing Health service staff receive an email alert when a story has been published about their service. If they are not a subscriber, health services are only email alerted if the story is of a ‘critical nature’, which consist of about 5% of our stories. They can of course watch the site to check for any stories, as the site is publicly available to all.

7.     Subscribing Health services respond to feedback.  Though non-subscribing health services do not have response rights, they can approach Patient Opinion to have a response made; however it means they have to watch the site constantly to check for any stories.

8.     The author of the story can respond back to health service comment, thus promoting constructive dialogue.

9.     Service improvements/changes made by the health provider are displayed on the site for the public to see.  That is, each story has an icon next to it, which highlights whether the story has been read, responded to and/or a change is being prepared or has been made to improve services.

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Q: How many health services have signed up? And what does this involve for a health service?

We have a number of services that have subscribed which include major public hospitals, private hospitals, government departments, primary care organisations (eg Medicare Locals), and NGOs such as care and support services including drug and alcohol services.

Subscription involves a cost, which depends on the size of the organisation and how they want to use the platform. By being a subscriber, providers receive a number of services including email alerts, response rights, training from our staff, report production, promotional materials to inform the public.

The platform also includes an administrative system, which means the health provider can monitor right across its services how their staff are interacting with the system.

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Q: Would you have hoped that more services would have signed up by now?

To be honest, I would have thought so, however it makes sense that it has taken time for health organisations to come on-board.  This is a new way of doing patient engagement, and it is the way of the future.

I think that patients are becoming more mis-trusting of organisation-led forms of engagement, and quite frankly, they are not that fussed on being treated as ‘feedback’ anymore.  Rather, they want to ‘be heard’.

And the technology (ie the web) is giving them a voice they never had.  The public is shouting about their experiences on the web.  However, health services find it difficult to ‘hear’ that voice, let alone respond to it.

What we want to do at Patient Opinion is make it easy for both the public and the health services to engage in this new way of engagement so that our health system can be the best it can.

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Q: What are some of the barriers to health services signing up?

I think the main barrier is fear of social media. I can’t blame them.  Most social media is about driving social conversations.

But Patient Opinion is different in that it is about driving patient participation and change. Once health services understand this, then they start to see that this type of social media can be very beneficial to them.

Another barrier is that health services are more familiar with the traditional ways of seeking feedback, such as surveys and focus groups.

However, these ways are opaque to the public.  They are not transparent in the way that social media is.  So there is a sense of health services fearing what others would think of them if the public had access to what is being said of them.

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Q: How many patient responses have been published? How many have generated a positive response? Can you give some examples of the difference that PO has made?

Whilst it’s early days, we are nearing 700 stories but they have been viewed over 600,000 times by the public.  In the UK, every story posted on the site is viewed 2,000 times on average.  Last Christmas, they had their 60th million viewing.

Anyone can go onto our Patient Opinion website and look for themselves about who is responding to stories and what changes are being made.

About 35% of our stories are being responded to.  You can see all the responses here. We’d like to see this increase.

And at this stage, we have an indicator on our main page that shows 0% of stories in the past 90 days have led to a change being made.  That’s not such a bad thing given its early days in Australia.

In the UK, they now have about 6-10% of all their stories being responded to that lead to a service improvement being made.  This is phenomenal if you think about it.

With this sort of transparency and improvement being made, you would think that Governments would be jumping in to promote us.

Well in the UK they are!  The Scottish government recently signed up to Patient Opinion for all their health services.  They also signed-up for Care Opinion for their adult social care services.

We also just launched Care Opinion Australia for care and support services. Organisations such as Multicap, Drug Arm Australia and Cerebral Palsy Queensland have recently subscribed to us.  They are leading the way for this sector.

Where PO is making a difference is largely across three areas:

1.     Communication between patients/carers and staff – attitudinal, empathy, compassion

2.     Service improvement such as the way things are done within the health service (eg. access, comfort, cleanliness, etc)

3.     Culture within the organisation – helping the staff ‘see through the eyes of patients’.

Here are two examples of how PO is impacting on organisations:

“We’ve been using Patient Opinion for 8-9 months now. I hadn’t anticipated that it is one of the biggest levers we’ve got around the culture of our organisation. We learnt how difficult it was to put ourselves in the shoes of the patient. We now have patient experience stories at every Board and Executive meeting. It has changed our focus. We have learnt more from Patient Opinion than any survey we have done”
Lesley Dwyer, Chief Executive, West Moreton Hospital and Health Service

“We launched Patient Opinion in July 2012 and immediately our staff began hearing how their patients and carers felt about the services and programs we provide and the difference we are making. We publish the stories in our monthly staff newsletter and our Board reviews the stories each month. The feedback is open and honest and, as it is from the patient’s perspective, it allows all levels of the organisation to see what services are valuable and what more we can do. We make an effort to recognise the staff mentioned in stories and we have also made a number of changes as a direct result of feedback received.”
Nancye Piercye, Chief Executive Officer, Murrumbidgee Medicare Local

We also have a number of formal ‘watchers’ connected to the site such as some Governments, and the Australian Commission for Safety and Quality in Healthcare.

These organisations are finding it very helpful to have access to a wonderful library of patient stories across the country, as well as to watch how health services are responding and improving.  This is just one of the benefits of being an open and transparent platform.

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Q: Anything else you’d like to tell Croakey readers?

Everyone has a story to tell about their healthcare experience, whether it’s about themselves, their loved ones or friends.  Hopefully their experience was positive.  But whether it was positive or negative, I would encourage Croakey readers to go to our Patient Opinion site and tell their story.

Australia now has an independent, accessible, safe, anonymous and constructive website for the public to tell their stories and ‘be heard’.  But it’s also contributing to making our health services better.

We need to get our stories to health service staff.  It’s the power of the story that changes their hearts and minds, and reminds them of the important work that they do.

• Follow Michael Greco this week at @WePublicHealth