Co-Creation With Patients: A Stellar Combo?
Only by working closely with patients can pharma deliver the best products and services. Read our practical guide to co-creating with patients.
It wasn’t that long ago that when pharma companies wanted to know what patients thought, cared about or needed, they asked doctors.
So successful has the patient-centricity revolution been that now, in late 2018, that past situation seems almost ridiculous. Pharma companies now aim to routinely consult, collaborate and partner with patients across every area of their businesses – and the momentum of patient involvement shows little sign of slowing.
But how good is pharma at engaging patients? More importantly, how good is pharma at co-creating with patients – the gold-standard of patient engagement?
“Pharma is getting there, but it’s not quite there yet,” says patient advocate Trishna Bharadia. “Other organizations, for example the third sector [voluntary sector] and service providers, have been quicker to embrace co-creation, perhaps because it's easier in terms of the regulatory environment or they've seen its value earlier.”
Jen Horonjeff, PhD, founder and CEO of patient-owned co-op, Savvy Cooperative, has seen this disconnect first-hand as both a patient advocate and patient-centered outcomes researcher. “I believe that people in the pharma industry want to do right by patients – they are genuinely trying to figure out how to serve them better. But, pharma has made a lot of money doing things a certain way and overhauling a giant, successful system is challenging.”
Asked to score pharma on current co-creation efforts, Lisa Egbuonu-Davis, VP, Global Patient Centered Outcomes and Solutions at Sanofi, gives the industry a reserved thumbs-up.
“I’d say: Fair. My definition of co-creating is to start from the beginning, in terms of defining the problem, the objectives and potential approaches, then working with patients throughout, designing the approach, testing the approach, expanding the approach. However, as an industry we're not always consistently at this level. Sometimes we reach it but other times, we seek patient input when a program is further along and we’re already committed to a specific approach. In those cases, we can't really go back and change the parameters.
“This happens a lot – it happens in research, in service development – but I do think it's happening less. If you're going to have people participate in design, you have to be willing to change your design. Otherwise it's just a waste of time.”
While it is clear that pharma has achieved a great deal in recent years, what are the main areas for improvement?
“It’s been said over and over, but the most important thing is to get patients involved much earlier,” says Bharadia. “Also, keep them involved throughout the lifecycle of the project. Secondly, recognize that patients are real partners; pharma has tended to see patients as contributors whereas, in my experience, non-pharma organizations have been more open to seeing the full value of patients.”
One project that embodied Bharadia’s vision of true co-creation was run by Sue Ryder, a UK-based hospice and neurological care charity. “Living Well with MS was a six-week educational course designed for people who have been diagnosed for a while. It plugged a gap we identified ourselves, as we patients knew there were already several other courses for newly diagnosed people.
“It was a really successful collaboration because I was involved from the very start – from the initial brainstorming of concepts – all the way through to evaluating of feedback at the end. I was able to provide input at every stage. Patient feedback has been very positive; I believe that is because a patient was involved in every stage rather than being asked for their opinion halfway through.”
Horonjeff concurs: “Some people in pharma are stuck in the mindset that you ask patients about something that’s already been done – a retroactive attempt to get positive feedback. If pharma is to move away from tokenism, patients need to be involved in identifying the problems in the first place – as early as humanly possible. What a doctor or researcher thinks that patients need may be very different from their actual priorities. The best way is to ask patients what obstacles they’re experiencing in their lives, and then co-create services to help them.”
For Bharadia, patients need to be valued for more than just their experience as patients. “If pharma was able to involve patients throughout the process and to see them as partners – as key members of the project team each of whom brings a unique set of skills and expertise – this kind of true co-creation would save a lot of time and create projects that are much more effective.
“I'm not just offering my expertise as a patient, but I bring a range of professional skills – like writing and content development – and access to my networks in the third sector, industry and the health system. With the Living Well with MS course, I was named a co-developer of the project, which gave a real sense of ownership,” she says.
Greater thought also needs to be given to the patients that pharma choses to work with.
“The industry needs to work harder to connect with diverse patients,” says Horonjeff. “Working with patients is a huge opportunity for companies, yet oftentimes they turn to the patients they've already worked with – it’s the safe and conservative approach because such patients are easy to engage and companies know what they're going to get. But ‘low-hanging fruit’ patients – and I consider myself one as I've worked with pharma companies in the past – cannot offer the entire spectrum of patient experiences.”
Diversity of input is not just a nice-to-have, says Egbuonu-Davis. “What works best is to get a variety of patient insight. One project I worked on that was very successful was with a diverse patient population that was new to insulin. It was amazing to me that, in the US, given the prevalence of diabetes in minority populations, how little the material speaks to them. Much of the material includes aspects like diet and activity, which need to be placed in cultural context. Even needle use has different context in different cultures. Making sure we get a broad array of patient input was a key reason why the program was successful.”
Diversity involves many factors, adds Bharadia. “I would like to see an end to patients being lumped together as one group. For example, you've got your average Joe-Bloggs patient, then you've got expert patients and what I call the professional patients, who can looking at overarching, systemic issues that go across patient communities. All of these groups of patients bring different value to co-creation – which companies need to consider when working out which patients to get involved with.”
When seeking to reach a diverse population, effort is required, says Horonjeff. “Research and industry professionals need to overhaul their expectation that people will just come to them. They must actively consider their outreach, because some people may be less trusting of the pharmaceutical and research sectors. Truly understanding how to engage diverse patients in culturally sensitive ways is incredibly important for pharma.”
Patient groups are still vital partners, says Egbuonu-Davis. “In truth, getting diversity of input is easier said than done. The easiest and most natural partners to work with are the patient advocacy groups, however, while some of them are quite diverse – seeking broader input through surveys or outreach to other groups – other groups tend to focus on the same kind of patients.”
There are many other ways that pharma can improve its co-creation efforts.
“We advocate strongly for making sure that patients who participate in a focus group, workshop, survey or whatever are told how their insights made an impact afterwards,” says Horonjeff. “It’s one of the easiest things to do. I understand that companies cannot share proprietary information but even a ‘thank you’ for participating is a good first step.
“Sharing back with participants that their insights will help inform a new product or service helps patients see that their insights and experiences matter, and that their contribution may help improve the healthcare system in some way. That's important for a patient, especially if a diagnosis has stripped them of the life they had before. To know that the experiences they're having relative to their health conditions are valuable can really help to partially fill that void,” she adds.
Egbuonu-Davis has a range of advice. “Transparency is essential in co-creation. When there are certain things that you want to do but cannot, whether through a budgetary constraint or from a regulatory perspective, it is really important to help patients understand the situation.
Testing is also important, she says. “Starting small with pilots then testing and refining is far, far more effective than building the whole thing and locking yourself in. Where patient input is particularly vital – the world of support programs, educational programs and technology-enabled apps – it’s actually really easy to test as you go along.”
For Bharadia, pharma needs to shake off its fear of patients. “Some people are fearful of true co-creation. Compliance is obviously a big thing; people naturally fear that they may do something wrong, but pharma people need to step out of their comfort zone because the safe option of doing things the way they’ve always been done will not let you move ahead.
“My experience shows that it is perfectly possible to be compliant, transparent and safe, although it may require a little extra thinking through of the way you do things. Companies need to make sure their people know how to do it in the correct way.”
Reticence can sometimes stem from a lack of confidence, adds Horonjeff. “Many people in pharma simply don't know how to start working with patients. Different companies have varying strategies when it comes to patient engagement – some are so afraid of getting a slap on the wrist that they won’t take any chances talking to patients. I understand their concerns; regulations and guidance do not cover every possible scenario for patient interaction. There are always potential gray areas, but many of the perceived restrictions people mention are just that – perceived. Companies need to do their due diligence on actual restrictions because a lot of them could be talking to patients, but are not.”
With a pharma insider’s view, Egbuonu-Davis sees many reasons why companies can be slow to truly embrace co-creation. “Number one, we're usually in a rush. To get budget, you’ve got to show impact, yet reaching out to patients and others takes time. Secondly, there are always regulatory constraints on how you interact with patients – and this depends on which countries you're in, so it is always a concern.
“Thirdly, there's simple tradition, the way things have always been done. People want an explanation of why a project is going to take more of their time, effort and budget. They want numbers, especially scientists, who want to know exactly how many protocol amendments will be avoided and how much easier enrolment will be,” she says.
A good way to boost co-creation is by sharing experiences, says Bharadia. “We need more platforms where we can all share best practice. We need events like eyeforpharma’s Patient Summit so that companies that are a bit fearful of compliance issues can learn from those who have already done it and overcome those concerns.”
Official guidelines might also be of benefit, she adds. “There is space for more documentation and guidance, and there are various initiatives out there. However, we must remember that guidelines can’t cover everything – guidelines are great, but they can’t be hard and fast rules, as every project has its intricacies.”
Trishna Bharadia will be sharing her wisdom at the Patient Summit Europe event in October. Click here to find out more.
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