Building honest dialogue with patient advocates

How can the industry listen to patients in a way that puts the person behind the disease first? Blogger Chris Aldred and Joe Delahunty from Ascensia have been working together to answer that question for five years. They tell us what they’ve learned and discuss what the industry often gets wrong in its patient engagement.

It’s not often I speak to a patient advocate and an industry representative on the same call – usually it seems the two parties keep a respectful-if-wary distance from one another. But Joe Delahunty, global head of communications for Ascensia Diabetes Care, and diabetes blogger Chris Aldred have a long-running partnership in building up the company’s patient engagement efforts – and so when they discuss these activities it makes sense for them to do it as a duo.

Chris leads the editorial board for Ascensia’s patient blog, and has worked closely with Joe on many of the company’s other patient engagement projects. They are both keen to discuss what they’ve learned from years of witnessing patient-industry interactions and finding ways to make these efforts work better for people with diabetes.

Chris, better known by his online pseudonym ‘The Grumpy Pumper’, was a well-established diabetes blogger before Joe first got in contact with him. He says it was a “total accident” he became an advocate, after he joined the online community to keep in touch with other patients he’d met and found that people liked his “honest” thoughts on diabetes care.

“There aren’t many people who wake up one morning and go, ‘I’m going to be an advocate’,” he says. “I think everyone in the diabetes community advocates for something because they’re passionate about it.

“I don’t know at what point I became an advocate, but I think in a way I always was.”

He highlights this to counteract the idea that patient advocacy is “dirty work” that involves “selling out” to the industry.

“Some people think we sell our souls to the industry – but every advocate I know does this because of their own passion, often at great expense to themselves.”

Nonetheless, Chris is vocal about what will and will not do for a pharma or medtech company – and when Joe first reached out to Chris in 2016 to get his thoughts on a new meter, Chris was clear that he wouldn’t treat it as a product review and blog about his thoughts.

“Joe said that was fine, and that Ascensia just wanted my honest opinion. It’s always nice to see someone that isn’t just contacting you to push their product to sell.

“He called me back a couple of weeks later and I gave my opinion – and he learned that I can be very honest about these things.”

Chris also told Joe that he would never engage with a company unless they gave something back to the community.

“We started talking about a campaign that had been community-run for a few years – Spare a Rose, which encourages people to buy one less rose on Valentine’s day and instead donate the money to Life for a Child, which will provide insulin to a child in a less advantaged country.

“Joe said that Ascensia’s employees were also keen to find opportunities to give back to the diabetes community, and because of this interest and the simplicity of the message it would be an easy sell – so we got talking and planned for the next year’s campaign. Ascensia ended up doing a great job for us, and have run it every year since.

“I know there’s always a corporate advantage to these relationships, but I don’t care if it’s also being done to stop kids dying of type 1 diabetes.”

Joe later hired Chris to go to various medical conferences and write reports from a patient perspective.

“It’s very rare that patients actually get to go to HCP conferences,” Joe notes. “We would publish Chris’ reports on our website and promote them with patients so they could see some of the developments that were happening at these meetings. Then Chris would give his own perspective on how they were going to affect care.”

Chris adds: “They wanted something in my own words, so that it would be something that people with diabetes would actually be interested in reading, instead of the medical, technical data that usually comes out in the reports. Personally, whenever I read reports like that I get bored.”

These writeups proved to be popular with the community, and over the years have developed into the Ascensia.com blog, for which Chris leads an editorial board that meets once a month to decide on topics to cover.

Joe says the aim for the company is to have a “hands-off approach” to these kinds of patient engagement.

“Chris and the editorial board drive the content. That’s important for us because it helps us understand the needs of the diabetes community, and how we need to work and build out products to address them.”

Chris and other online advocates have also worked with Ascensia on Diabetes Social Media Summits.

“We bring together a group of advocates for a few hours,” Joe explains. “We sit down and talk about the topics that they feel are important. We then look at those topics and ask whether there are any where there could be a mutual agenda with the company. If there are, we come up with campaigns or initiatives that try to address them.

“Some are things that the community wants to address and work on themselves, and for others they want Ascensia’s support and partnership. We look at the best ways to approach each one.”

Part of the appeal of the summits for Chris was as an alternative to other meetings that had become “too big and too commercialised”.

“I’ve been at a lot of events where you never see any tangible outputs come out of them – then when you return the next year it’s like everyone is just redoing the same thing.

“When Joe and I were talking about the summits, I said I didn’t want the same people in a room, doing the same thing, with no output, every time. So we try and invite different people to every meeting we’ve done and come up with tangible goals from them.”

Start with the person

Chris’ key message is that companies engaging with patient advocates should “start with the person”, not come to them from a product point of view.

“Companies will often tell you how exciting their products are, how they’re going to make your life great. The thing is, I know how lucky I am to have the technology I have, but I don’t actually want any of it, because I don’t want diabetes. I didn’t ask for this.

“I see a lot of ads for these technologies that have the implied message of, ‘Wouldn’t it be great if people with diabetes didn’t have diabetes?’. These adverts come off as very patronising and stigmatising to the people that don’t have access to the technology. And that’s still one of the biggest challenges in this area – access to standard technologies, healthcare and education.”

Joe echoes this.

“Rather going to advocate like Chris and saying, ‘This is what we want to do, can you be involved?’, we want to go to him with a blank page,” he says. “If we want to do an event, for example, we can ask him what topics are important to the diabetes community at the moment, then try and come up with a shared purpose and see where we can work together.

“The industry doesn’t see enough of that.”

He adds: “If you do want a group of advocates to look at a product for you, it’s best to be upfront about it. We’ve had good feedback in the past when we’ve been clear that we want people’s honest opinions on a product, and we’ve not asked them to write about it or anything afterwards. If those discussions happen as part of another patient advocacy meeting, we try to keep them separate from the rest of the discussion.

“That allows people to maintain their independence. If they don’t want to be involved in that part, they can leave.”

Both of them note, though, that it’s important to recognise that each person with diabetes will have different experiences and different opinions.

“I go to Chris if I want to know what a white male based in the UK thinks about certain aspects of diabetes care,” Joe says. “If I need wider opinions than that, I ask him who should I speak to in India, or Japan, or the US, and expand the network that way.

“Even when you’re doing that you have to keep in mind that there are millions of people with diabetes across the world. Each one of them has a different experience and different challenges, and you’re only ever going to get to a very small portion of it.

“You’ve got to try and take the advice that you’ve got and look at where there are common things that will be useful for a large group of people. Remember that different people are going to have different challenges.”

This is particularly important when it comes to product design, says Chris.

“Sometimes you look at a device or an app and think, ‘No one that lives with diabetes has touched this until now, because all the features are just wrong.’ Or it hasn’t taken into account the wide range of individual needs in the community.

“A good example of that is a meter that beeped loudly when it receives the blood. That didn’t bother me, and someone with vision issues really liked it. But a young woman I knew who was in school at the time said she would never use it, because everyone in class would look at her when it beeped.

“Even the kind of device that people want is going to vary. I’ve been at talks with healthcare professionals that look after people in very deprived areas in America, who won’t have a smartphone because it will probably get stolen.

“It’s not just about coming to patients with a blank page, but also thinking about who your target audience actually is.”

Insights into actions

The hope from Ascensia’s side, of course, is that insights gathered from these activities can help inform more patient-centric ways of working and designing products.

Joe gives a few examples of things the company has learnt from its patient engagement, including realising the impact of diabetes-related complications for the community.

“One of the things we identified was that there was not enough conversation about this – in fact it was almost a taboo subject within diabetes. People tend to either talk about complications in a way that scares people or they just don’t talk about them at all.

“With the advice of a social media summit group and the editorial board, we came up with an unbranded campaign to raise awareness of these complications and the fact that they need to be talked about. We launched that on Facebook last year.”

Conversations with patients have also identified the fact that people with diabetes often don’t have a good “back-up plan” in case the technology they use every day fails.

“We worked with the community to develop a checklist of what they should be carrying with them in case their usual technology breaks, including the items they should carry on a day-to-day basis and what they should take with them when they’re away on holiday.”

Joe says the company also found that patients felt that the language used to describe diabetes can often be demotivating, alienating and cause stigma.

“There is a strong movement within the diabetes community to ensure that when people are talking about diabetes, they talk about it in a way that is encouraging, not stigmatising, and does not cause anxiety.

“We decided to create a language education module for our employees. When someone starts at the company, they have to go through that and learn how best to interact with people with diabetes.”

As for why companies should encourage patient advocacy, Joe says that it allows companies to contribute to the “greater good” for communities in a way the industry has not traditionally done.

“It comes back to that idea of having a shared agenda, finding the goals that are of mutual interest and making sure you’re working on them together.”

“The more pharma and medtech employees that understand the challenges of living with diabetes, the less they’ll make assumptions on what people want,” says Chris. “It’s important to be able to be able to have open conversations with them and be able to say what you want to say.”

“I think that honesty that people like Chris bring to the table is incredibly important,” Joe adds. “People like hearing someone talk about issues that aren’t usually discussed. They feel like a problem shared is a problem halved.”

Chris sees this as another reason why ‘advocate’ is not just an official title, but something any patient can do, even if it’s through small acts.

“If all you do in your advocacy work – or whatever you want to call it – is make someone feel less alone, less like they’re walking in the dark, that’s a job well done.”

Chris Aldred was diagnosed with Type 1 Diabetes at the age of 25. Fifteen years later, Chris started to blog as The Grumpy Pumper and has been an active member of the Diabetes Online Community ever since. He is widely considered to be a global diabetes advocate and is a regular speaker at global diabetes conferences. Chris is a member of the Council of People with Diabetes for Diabetes UK and a board member of IDF Europe.

Joseph Delahunty is global head of communications for the PHC Group and Ascensia Diabetes Care, overseeing all internal and external communications activities, including patient advocacy. Prior to Ascensia, Joseph worked for FTI Consulting for more than 12 years, in their London and New York offices, leading global communications programs for healthcare clients.

George Underwood is the editor for pharmaphorum’s Deep Dive digital magazine. He has been reporting on the pharma industry for seven years and has worked at a number of leading publications in the UK.

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