The need to do better for patients

By Megan Brodie 2 years ago | In Industry, People
  • 2 years ago
The Patient Voice Initiative's Ann Single

20 July 2022

It is perhaps surprising for some to learn that internationally renowned patient advocate Ann Single started her working life as a journalist, particularly given she has developed technical knowledge in health technology assessment (HTA) processes that enables her to converse easily with even the best health economists.

Yet Single says her journalist background means asking the right questions is as important as finding the answers, and by approaching each new challenge with a list of questions she hopes to get to the heart of an issue.

Hence as she prepares to join the panel as a patient representative for the upcoming review of Australia’s HTA guidelines, Single has already made a list of questions to ask in order to achieve a better outcome for patients.

Single’s task representing some 25 million Australian patients is a daunting one and she jokes that in joining the panel, she is unlikely to either boost her career or her popularity rating, yet she believes she can make a difference.

“It’s a really difficult space but the reason I said yes is because I believe that HTA can do better for patients,” she said.

“I know it is not going to be a popular role – I don’t expect to get more Christmas cards for participating – but I do think there is a collective will in the patient community to do something better, and I’m happy to do it. However, I don’t see myself doing it in isolation. I see myself doing it with patient communities.”

Believing others were equally qualified for the role, Single first asked herself if she was prepared to commit to the task and “to work as hard as possible to take advantage of best methods and best policy to get great outcomes for the patient community”. Having answered in the affirmative, she now sees the review as “an opportunity we should throw ourselves at”.

“I’m optimistic. People signed up to this so we need to make it happen but until we get some flesh around it, it’s all a question mark. Will you get everything on your checklist? Maybe you won’t, but you’ve got to turn up.”

From journalism to patient advocate

After gaining her communications degree, Single thought a career in journalism would allow her to “do something that would change the world” but instead, quickly found herself frustrated by reporting people’s opinions while never really getting to the truth of any single issue.

Her search for truth led her to take what she thought would be “a small diversion into science communication” that soon developed into a lifelong interest in health, particularly health evidence, solidified in the early 2000s when she worked with the Health Technology Board for Scotland as Director of Communications and Public Involvement.

“I got interested in how different types of knowledge compete for supremacy in science, and how people with knowledge from living with or treating a disease were marginalised in our layers of evidence,” Single told MedNews.

“Working in HTA in Scotland, the first thing I noticed was that everyone was at the table except for the patients. I was told patients didn’t get involved because it was technical, and luckily I had a CEO who was open to the idea that there was some value to be explored there.”

That early discovery led to 20 years of working to increase patient involvement in HTA, most recently through her involvement with the Patient Voice Initiative and as chair of the international HTAi Patient and Citizen Involvement Interest Group. HTAi held its annual meeting in the Netherlands last month where Single played a leading role.

With HTAi announcing it would hold its 2023 conference in Adelaide next June, the timing could see it coincide with the release of the HTA panel’s draft report, perhaps providing the perfect opportunity to see how its findings match with global thinking.

The challenge of HTA

HTA is difficult for the average Australian to grasp but Single says Australia’s HTA committees carry the burden of using it not only to deliver good treatments to patients quickly, but also to protect patients from treatments that could do them harm.

“Patient communities are saying they want access to treatments faster, but some patient communities are also asking why more care wasn’t taken before a treatment came to their community,” she said. “That’s the complexity of this space.

“How do you get systems that can respond quickly and meet patients’ needs, particularly when people are running out of time, yet at the same time make sure these treatments are robust and safe? What drives me in this space is getting great outcomes for patients, and safety is very much a part of that.”

Looking towards the year ahead where she will work closely with other panellists including PBAC chair Professor Andrew Wilson, former Pfizer executive John Young and NACCHO deputy CEO Dawn Casey, Single plans to stay focused on her role of representing patients, and on continuing to ask questions.

Just as when she first set foot on the HTA pathway, she wants to see patients involved earlier in the HTA process and wants to ensure what could be adversarial viewpoints on the panel do not result in the patient perspective getting pushed aside.

She sees HTA as a transparent, continuously evolving learning process, and is keen for the panel to explore ideas around life cycle HTA, the use of real world data and real world evidence, and what HTA means in the Australian context.

“I’ve got a clear commitment that we can do more with HTA to get better outcomes for patients but I’ve got a lot of questions around what the Australian community is thinking, what the panel is thinking, and how we are going to explore these ideas,” she says.

Her questioning mind shows that while Single may have left her journalism career behind, what she did discover was a path that would help her change the world – if only for 25 million Australian patients.

©MedNews 2022

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