NHS street sign (foreground) Big Ben (background)

Engaging in the NHS and healthcare landscape in preparation for a product launch can be tricky at the best of times. Competing interests, an overcrowded policy marketplace and reluctance on the part of some stakeholders to work too closely with pharma all conspire to make life difficult for campaign managers. So when faced with a product that is intended for use within a low profile condition, in the sense that the condition has little profile beyond specialist clinicians, and where there may be no clinical consensus on the pathophysiology and treatment or management best practices, the scale of the challenge can seem daunting. Fortunately there are a number of consistent challenges and solutions, which can be used to inform an effective engagement strategy. Four of these to consider are as follows:

1. Responding to a lack of patient advocates

In a typical environment-shaping campaign the patient voice is made central wherever possible, as putting a human story to the unmet need case can motivate stakeholders to prioritise and act on the primary campaign asks. With low profile conditions, finding patients and patient advocates can sometimes appear almost impossible.

Patients suffering with these conditions may have a strong sense that medical professionals have no idea what is wrong with them and that they themselves are too unwell or don’t have enough clarity on the condition to become an advocate. It may therefore be necessary to start small.

As with most campaigns, in the early stages the first steps should include identifying who the leading clinicians are and exploring ways to work with them to build a suitable campaign objective and narrative. These clinicians may also help with the recruitment of patients to take part in patient experience projects, such as interviews or case studies.

Depending on the patient population size it might also be appropriate to support the establishment of a patient representative body. Clinicians can again play a part here, by making their patients aware of this body and suggesting they take part in setting its agenda, as well as taking a leadership position within it.

2. Bridging the gap of understanding

Low profile conditions by definition will not be readily understood by most policy stakeholders. In some cases, new conditions may be conflated with several existing conditions or unhelpful umbrella terms. The task here is to work out what level of understanding you think each stakeholder really needs for the purposes of the campaign.

For example, parliamentarians will be keen to know the patient population size, ideally with an estimate for how many patients live in their constituency, the economic impacts and precisely what role they are being asked to play in ‘solving’ the problem. They do not need to know anything about the pathophysiology or the latest research, though medically trained parliamentarians may on occasion show interest in knowing more.

If you are able to bring multiple stakeholder groups together for a single event this can provide an ideal opportunity to present a video demystifying the condition and explaining why it deserves to be treated just as seriously as other comparable conditions. It is important to use all appropriate media to raise data on comorbidities and the broader quality of life and economic impacts of the condition. Combining this with another output that encapsulates some of the most emotive and relatable aspects of the patient experience can also help bridge the understanding gap much quicker than a series of individual meetings, press releases or twitter campaigns.

3. Demonstrating authenticity

One of the biggest challenges in engaging around low profile conditions is protecting against the accusation that a pharmaceutical company is creating a problem to solve. The reason this is such a problem is that a) there’s a history of commercial interests making bogus claims to sell products (think homeopathy for example), and b) in order to make progress the pharmaceutical company has to be a proactive player in patient empowerment, and some will always see pharma as inherently untrustworthy in this role.

A recent paper on the problems of expanded disease definitions published in BMJ Evidence-Based Medicine, and the Royal College of GPs’ supportive response to it, provide further reason to take this reputational risk seriously – stakeholders are only going to become more sensitive to the “disease mongering” issue in coming years.

The key to protecting against this accusation is by allowing expert clinicians to lead on calls for action and demonstrating their role in the campaign clearly in all communications. However, at a basic level it is also important to show a real understanding of wider patient experience and quality of life, in order to display the need for medical innovation, and ultimately, new treatments.

4. Providing evidence

To really make the case that the condition deserves recognition within policy circles alongside others in the same therapy area and to push for improvements to the pathway or standard of care the data has to be comparably robust. This means that if it hasn’t already been done then one of the first actions in the programme must be to generate and collate all the relevant quantitative and qualitative data to support the severity and / or prevalence of the condition. Ideally this data should be produced and publicised in collaboration with patients and clinicians. And don’t forget to give the report a pithy name!

Without a strong evidence foundation there is little chance that your campaign will be able to influence key therapy area policy processes, bodies and documents, which this will have ramifications for what can be achieved in terms of funding, pathway optimisation and NICE recommendations.

No small task

Environment shaping for a new condition is a long-term undertaking and one that can easily yield disappointing results if the fundamentals outlined above aren’t addressed. The examples of progress over the past decade in fibromyalgia, irritable bowel syndrome (IBS) and female sexual dysfunction (FSD) show just how slow the policy and commissioning environment can move to catch up with the latest clinical findings despite high prevalence rates and motivated patients and clinicians. By immediately tackling the patient voice problem, mapping out the knowledge gaps that you hope to bridge for each stakeholder group, ensuring the clinicians and patients take the lead as much as possible, and maximising the strength of supporting evidence from the outset, you can take the right first steps to shaping the environment ready for launch.

If you are planning a new brand campaign, Four Health is one of the leading providers of healthcare public affairs, policy support, medical education, KOL engagement, digital design, media buying, social listening and other engagement services. For further information contact deputy managing director Daniel Cambers here.