True pharma-patient co-creation

A recent MS patient group forum hosted by Merck KGaA demonstrates the power of true co-creation with patients.

This year saw Merck KGaA host its third patient group forum at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) congress in Sweden.

But this forum had a key difference from previous years – it was developed entirely in collaboration with multiple sclerosis (MS) patient advocate Trishna Bharadia.

Bharadia says that this affected every aspect of the forum’s design, and resulted in a resounding success that Merck hopes to replicate in the future.

Family planning and MS

This year, the theme for the forum was family planning and MS.

“There’s a big unmet need for more information on this topic,” says Bharadia. “At the moment people aren’t necessarily able to make an informed decision about whether they should have children or not. And it’s not just about the person who has MS – it’s also potentially about their partners as well.”

There were three parts to the event. First was a panel discussion, guided by the questions from attendees and featuring a diverse group of panellists – a neurologist, a representative from the Multiple Sclerosis Association of America (MSAA), a mother who has MS, and a representative from Shift.ms, an online patient community that has produced a series of videos about family planning and MS.

The second part was a roundtable discussion, based around some of the themes and issues that were brought up by the panel.

Then there was a period of networking so that attendees had the opportunity to talk to people from all over the world who are involved in MS patient advocacy.

“One of the aims was to give the patient groups and patient advocates the space to share best practice,” says Bharadia. “For example, the neurologist’s hospital actually caters for women who are planning to have a family and who have MS. There are joint clinics run with the obstetrician-gynaecology department. That isn’t what’s happening in the vast majority of places. Most of the time, if you fall pregnant and you have MS, neurologists basically say, ‘I’ll see you in nine months or when you stop breastfeeding’.”

Bharadia says that much of this was influenced by Merck choosing to involve her as an MS patient in the development of the forum.

“I co-led on the development of the project, and that included everything from how the actual event was put together and what the components of the event were, to who was going to be best suited to be on the panel and what representations we needed.

“I also consulted on the language that was used throughout the event and in the invitations. I made a real push that we shouldn’t be using the word ‘patient’. We referred to ‘people affected by MS’ instead, because that not only encompasses the person with MS, but also the people around them.”

Bharadia also gave input for the setup of each component of the event.

“For example, I suggested that we needed to have a designated notetaker who wasn’t somebody participating in the roundtable, so that the delegates – the patient advocates and patient group representatives – weren’t worrying about also having to take notes to feedback into the post-event report.

“Often, when I’ve been to events, somebody who is actually on the roundtable is designated as the notetaker. They then end up worrying more about taking the notes than actually listening and being able to contribute to the discussion.”

The aim, she says, was to make the event “as patient-focussed as possible”.

“To be perfectly honest, the only way to do that is to have somebody who is used to going to these kinds of events, knows what kind of issues can come up, and is knowledgeable about the way in which we could get the best out of the event and the delegates involved.”

A positive change

This focus seems to have paid off – Bharadia says that the feedback they’ve received has been “overwhelmingly positive”.

“The fact that the delegates could see that I had been involved in the development of the event, and that I was a visible presence at the event itself, really set the tone for the whole event. It felt like it was an event for them. If somebody who has intimate knowledge of living with MS was there, up on stage, it wasn’t a company event that was being held for other people. It was being done with us.”

Despite pharma’s supposed enthusiasm towards patient engagement, Bharadia notes that it is still rare to see this kind of co-creation within the industry.

“If they do have adequate involvement, it tends to be towards the end of a project, where they’ve already created something and they’re just asking patient groups what they think of it.

“A lot of the time, even if you want to give them constructive criticism, part of you is wondering how much they’re actually going to change if they’re asking about something that has already been developed.

“It’s starting to change, and I’m starting to see more companies recognising the value of getting patients involved much earlier, but the industry definitely still isn’t there.”

Trishna says she would also like to see a recognition that there are different levels of patient advocates.

“There are some who are very highly skilled, and have a lot of experience in this type of thing. They understand the industry and its restrictions.

“It shouldn’t be a case of just getting any old patient who happens to have the condition. It needs to be the right type of patient, because otherwise you’re not really going to be able to progress in a less-frustrating way.

“Even with this forum, there were compliance issues that we needed to overcome. Somebody who isn’t knowledgeable about the way that compliance works would have found it very frustrating, and might not have been able to give input in the correct way.”

For example, as with all events like this the panellists at the forum were not allowed to talk about specific drugs.

“That’s probably one of the biggest issues when it comes to family planning and MS, but because of compliance we weren’t able to talk about it. Somebody who doesn’t understand the way the pharmaceutical industry works might have turned around and said, ‘Well, that’s just silly. It’s such a big issue, and we should talk about it anyway’.”

Bharadia wants pharma to know that many patients themselves are keen to be involved in these kinds of projects if companies are ready to reach out to them – although actual levels of engagement willingness will vary between patients.

“I know lots of people who wouldn’t be comfortable going up on stage and publicly talking about their own journey with family planning and MS. That’s one of the reasons why we produced a post-event report, so we can reach as many people as possible.”

Thanks to the success of the event, Merck is hoping that from now on any of their events involving patients will be developed in collaboration with an advocate.

“It shows a real commitment for a company to have done this,” says Bharadia. “It wasn’t easy; it never is when you’re doing things for the first time. You need to have buy-in from people internally. That makes it much easier to make things like this happen. And it’s really great to be able to see a company actually taking on board things that I’m saying.

“It just makes sense to have patients involved right from the very beginning. That’s what true co-creation is.”

Trishna Bharadia is a multi-award winning health advocate and patient engagement champion who lives with several conditions, including multiple sclerosis. She was diagnosed with MS in 2008, aged 28, and since then has worked to put the patient voice into every stage of the healthcare journey. She collaborates with industry, the third sector, clinicians and individuals living with chronic illness. Her work includes writing, content/literature review, consultancy, media outreach and speaker services. She regularly works across disease areas, on topics as diverse as digital health, disease awareness, patient engagement, health literacy and engagement with BAME communities.

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