Mapping the patient journey: eight ways to improve support programmes

Chris Ross examines how pharma can drive awareness and adoption of patient support solutions

Patient support programmes (PSPs) have arguably never been more important. 

As health systems all over the world adopt remote models of patient engagement, and fears of COVID-19 transmission make people think twice about seeing a doctor, tools that help patients self- manage their conditions are providing value far beyond their original purpose.

The development of PSPs has been trending for pharma long before COVID-19. And with good reason. Support tools are helping patients take better control of their care, improving patients’ understanding of disease and giving doctors greater visibility of patient behaviour and clinical indicators.

The net result, in areas where programmes have been successfully developed and adopted, is more engaged and activated patients and better health outcomes. That’s great for healthcare providers, and even better for patient care.

For pharma, PSPs are an attractive option. They can strengthen value propositions, differentiate brands and help build trust with patients and HCPs.

In recent years, PSPs have proved instrumental in securing payer support and market access, with companies increasingly wrapping support services around their medicines to provide value beyond the pill.

In some areas, such as gene therapies and high-cost cancer treatments, accelerated approval and early access schemes are conditional on capturing real-world outcomes data – and patient support tools provide the perfect engine for it.

The argument for PSPs no longer needs to be made – and advances in digital technology have only added more colour to the canvas of opportunity. But challenges still remain.

An NHS Confederation briefing in November 2018 noted the value of PSPs but cited lack of awareness among HCPs and patients as a common barrier to their uptake. It said improving knowledge, in particular around their regulation, could make HCPs more willing to recommend them.

1. Partner with patients

“The fundamental goal of any patient support programme is to make patients’ lives better,” said Fiona Hammond, Managing Director, Hamell. “It’s a broad aim but you cannot take a broad-brush approach. When you’re developing a support programme, it’s important to understand the behaviour of different types of patients so that communications connect and resonate with them as individuals.

“The most effective way of ensuring a solution captures the voice of the patient is to set up a Patient Steering Group or advisory board at the earliest stage of programme development. This is an integral part of co-creation – to ensure that what you’re designing isn’t based on a best guess or current trend, but on an understanding of what people affected by the condition actually need and want.

“What are patients’ biggest challenges? What’s the unmet need? If you enable them to play a role in setting that agenda, you have a better chance of creating something that helps. It’s all about open dialogue.”

2. Go for co-creation, not co-design

Involving patients in the creation of solutions is essential – but it’s an activity that can make many pharma companies twitchy. One of the most consistent messages emerging from patient engagement conferences is the need for the industry to adopt a ‘can do’ mentality, rather than allowing fear of regulation to stifle innovation.

Organisations like the National Institute of Health Research (NIHR) have developed some great resources to help define the parameters of patient engagement and involvement – and it’s clear that, with greater transparency, there’s scope for pharma to be braver.

“The biggest hesitancy is pharma companies actually engaging the patient in the end-to- end development of the solution,” said Chris Finch, Managing Director, earthware. “There’s a difference between co-design and co-creation, but sometimes people confuse the two.

“Co-design is typically where companies get some input from patients at the start – then go off and build their solution. With co-creation, patients are intimately involved right the way through development, testing and roll-out. In our experience, co-creation is the best approach.

“You get much richer insight if patients are engaged all the way through as they’ll stand up for the features that are important to them – which can be crucial if regulatory teams start raising objections or putting barriers in place. The patient voice is vital, but with co-design, it’s often forgotten in the latter stages of a project.”

3. Understand the patient journey 

“We generally try to ensure that representative patients or carers are part of the project team,” said Chris Finch. “At the outset, we’ll ask them to illustrate every step of their treatment journey – from pre-diagnosis through to ongoing management.

“What problems did they encounter? And what opportunities did they spot to improve the journey? When you map these out, it gives you a really good idea of the pinch points and common areas of challenge that patients face – and that creates the foundation to scope out solutions that can make their lives better.”

4. Be specific – and be valuable 

It goes without saying that PSPs must be designed with the patient at the centre – but patients don’t exist in isolation, so it’s important to understand the entire ecosystem and the needs of everyone in it. The devil is in the detail.

“When you’re planning a solution, be specific,” said Elisia Cox, Associate Account Director, Purple Agency. “It’s the only way you’ll develop something useful. This means talking to all the various stakeholder groups – patients, prescribers and payers – to find out what they value and what they need.

“For example, if you’re working in cystic fibrosis, the disease affects all generations from children and adolescents through to mature adults – each have different needs and different involvement in their own treatment. A general solution won’t work. You need to take account of the nuances and develop solutions that cater for specific needs. That specificity will ultimately be key to adoption.”

The ultimate challenge is to work out where your support programme can add value – or help demonstrate value. For example, if our value proposition is built around reduced hospitalisations, better adherence or an absence of side effects, a good patient support programme can help you prove it.

They’re a great way of bringing the rigour of a clinical trial into the real-world setting – unlocking real-world data that strengthens the argument for your product. But they have to be built with that value in mind right from the start.

5. Focus on behaviour – but do it holistically

Behavioural insights are critical to programme design. “Understanding what makes the patient tick is one of the first things you should be thinking about,” said Fiona Hammond. “It’s complex – there’s so much to consider.

“For example, what are their beliefs around the product or disease area? How do they understand it? Do they have any misperceptions or concerns that you need to overcome? And are there any specific behavioural drivers that should influence your approach?

“The industry has come a long way in its application of behavioural theory – everyone now recognises its importance. However, there’s still a tendency for companies to focus on one behaviour change model – they might be experts in nudges using behavioural economics, or specialists in applying the COM-B model to drive change.

“But behaviour change isn’t one-size-fits-all. The best approach is to take a holistic, evidence-based view of all the different theories and work out which are most relevant to your target patients, and how you can combine them to get the best results. It’s not just about nudging or health psychology. It’s about the complete picture.”

6. Think long-term

Supporting patients isn’t a quick fix – it’s a long haul. “If you’re going to develop a patient support programme, it’s important to see it as a long-term commitment,” said Elisia Cox.

“This is vital to ensure it’s got credibility with your customers. In the past, some pharma companies have got very excited about their patient support initiatives at product launch, only to quietly discontinue them 18 months later. This doesn’t look good. The most successful patient support strategies take a long-term view from the outset, and cut their cloth accordingly.”

Thinking long term has implications right across the board, not least in terms of creative investment. “If you’re going to sustain something that’s genuinely useful to patients, it’s probably going to be hungry for content and need regularly updating as new information comes in,” said Elisia. “Often, creative agencies are brought in
at the beginning to make sure the solution looks attractive and the user experience works, but the mechanics of ongoing creative development can sometimes be overlooked.

“It’s important to consider the minimum level of content you need to commit to and budget accordingly. How frequently will you need to refresh it? What’s the process for creating, managing and translating it for all your different audiences?

“And how do you ensure the creative experience is consistent and appropriate? These are important conversations that need to be considered up front, in partnership with your agency. Your decisions should be anchored to a long-term vision that’s clearly defined and never shifts – irrespective of whether your agency changes.”

7. Partner and promote to drive adoption 

Successful uptake of a PSP will ultimately hinge on the design, utility and perceived value of the solution. The approaches outlined above will obviously help. However, a ‘build it and they will come’ approach will not work. Distribution and adoption must form part of your strategy from the outset.

“Don’t just focus on the solution, put plans in place to support its distribution and adoption too,” said Chris Finch. “You can create a brilliant programme, but if no-one is aware of it or no- one uses it, it’s worthless. As an industry, we often assume that doctors will recommend our programmes when they see appropriate patients. That’s not always the case, so we must consider other channels too.

“Patient groups can play a major role in advocating your solution, not least because they usually have a good reach into the patient communities. It’s another great benefit of co- creation; if you involve patients throughout the process, they’re much more likely to want to share what you produce. That can only increase the chances of it getting into the right hands.

“Another option is paid search or advertising – which is perfectly possible with non-promotional programmes. The most successful companies budget as much for promoting a solution as they do for developing it in the first place.”

8. Don’t forget the bigger picture 

Finally, arguably the most important consideration when developing a PSP is ‘purpose’: why are you doing it? At face value, the reasons will be obvious.

However, it’s important to remember that although patient support is a long-haul journey, the job of a PSP isn’t to make patients reliant on a programme, but to give them the skills, confidence and knowledge to be independent without it.

In the bigger picture, PSPs can play a much larger role in the drive towards healthcare for all, increasing access to quality health services. “Patient support programmes have great potential to reduce health inequalities – but only if they’re developed with that goal at their heart,” said Fiona Hammond.

“For example, if health literacy is a challenge among your target patients, you’re not going to widen health inequalities if your programme doesn’t address it. Similarly, if you don’t communicate the availability of your programme effectively, or you’re relying on patients to seek it out, you’re only going to attract the most activated patients. These are likely the ones with the least health inequalities – so once again, you’re widening the gap.

“The trick to greater adoption – and equitable care – is clear communication; if the stakeholder initiating the patient on the support programme understands how it works and can convey the benefits, uptake becomes much easier. In the final analysis, HCP/patient communications is key.”

Chris Ross is a freelance writer specialising in the pharmaceutical and healthcare industry

Source:PMLiVE.