Navigating the ‘Patient Metro’ – a journey full of insights

“These are the patients that provide the unfiltered, and current, versions of what you are looking for when you are building a solution or intervention. It goes beyond contact with patient organisations and it takes a lot of effort and, increasingly, social media listening as they may not be involved in a patient advocacy group.”

Sprout Health Solutions combines academic rigour with commercial understanding to design evidence-based behavioural strategies. Through systematic review, stakeholder co-creation and psychological theory, it aims to generate deep patient insights that are applicable across the full duration of the drug development cycle. Vivienne observes: “The objective is to show value to the patient, the HCP or the regulator and that all comes down to understanding the person on that journey and where they are at a particular time.

“It’s ideal if you can get that interaction early in the journey such as the preclinical phase or, better yet, in discovery when the patient voice can help shape target product profiles (TPPs) and research priorities, guiding drug development efforts right from the start. We are at a time when there is more pressure to understand value across everything we do and every effort we make so, if you can build a strategy that starts early and continues through regulatory and commercial stages, you will find benefit. Our experience shows that this important work saves you from getting to that marketing point and finding you have a product or a strategy that is off target and not really relevant.

“Industry is focused on putting the patient at the heart of everything, but that can be tricky because of competing priorities, which are understandable, but that is where you need to be strategic and look at those interaction points with patients and how you use their insights and build on each learning.”

Patient engagement has become easier with digital advances and the ability to perform interviews remotely, but Vivienne cautions that the ease of information can lead to patients not feeling fully involved. “Remote interviewing is great, but people can feel bereft afterwards because they may have opened themselves to vulnerability and shared their most deeply held personal insights, but when the laptop screen closes that is the end of it,” she says. “As researchers, we need to be aware of this and being a custodian of this vulnerability. Of course, this is a challenge for both parties in an interview, so the aim must be to develop and nurture relationships that go beyond being transactional, and give back to the patient, their community and the organisation.

“Getting it right has a real impact, from early on, as you can see both the barriers and benefits in front of you. Working hand-in-hand with patients, from the research inception right through to plans for dissemination, demonstrates your commitment to keeping them involved, gives them a return on their time investment by getting something back and being active contributors in their care. This is not a given, it has to be worked on.”

Christoph Bug, vice president of global medical at Veeva Systems, believes there is a hunger across healthcare to share insights. “There is more collaboration, trust, exchange and, importantly, there is also more opportunity and willingness to share insights. Information is flowing back and forth between industry and stakeholders, including patients, and this is a good thing because we can fix any problems in healthcare together.

“What is new is how industry handles these insights. Previously, they were received and shared by email, but there was no process to structurally capture, document and analyse them, and then share them with the right person. The industry has made great progress in harnessing insights, identifying gaps, educational needs and issues along the patient journey.

“Now, we also have tools that capture, analyse and aggregate insights quickly and easily and get them to the right people so action can be taken.”

Strategies to reveal insights – traditionally from questionnaires, one-to-one interviews and focus groups to digital engagement and AI stimulus – are generating a wealth of data and information for companies, their field teams, HCPs and patients. The challenge is in interpreting the key points rapidly and turning them into action plans, observes Christoph.

“The industry needs to surface insights and translate them into action rapidly. Veeva Link Medical Insights helps customers to capture, process, tag and analyse them, to ensure those insights get to the right people quickly,” he says. “The advantage is that insights are turned into action much faster than traditional methods that sometimes have to go through multiple approvals and take 90 days before they arrive at the right stakeholders.

“By sharing insights efficiently and quickly, it provides an opportunity to understand complex issues and detect patterns that might otherwise take months to emerge. It enables you to use the power of patient and HCP experience to identify problems and to collaborate on common objectives.”

He highlights that glitches in patient pathways can differ from condition to condition and from region to region within the same healthcare system. “Patients and patient associations are incredibly important in identifying issues and pathways to solutions,” he says. “When you decide to address a broken pathway, it is the patients that can indicate where to start first; they know where the pain is and what isn’t working.”

Veeva Systems underlines the need for organisations to have a definition of what an insight means to their business, so that medial affairs and clinical teams can use them to elevate performance. Its white paper: Measuring the Impact of Medical Affairs: Determining the quality and actionability of insights lists a range of protocols to use insights to improve patient outcomes.1

“Having a system in place is critical to organisations being able to maximise the value of the insights they capture,” says Christoph. “It helps them get better and, ultimately, improve patient outcomes.

“The feedback we have is that this approach identifies clinical hurdles much faster and reveals patterns that they weren’t aware of. Having that knowledge makes a big difference. Gathering and using patient insights is like having your ear to the rail track to hear what is coming down the line and do something about it. Without them, you risk missing the signals and opportunities they bring.”

Claire Paling, Vice President, Patient Engagement and PR, at healthcare agency Precision AQ is another advocate of using multiple approaches to secure early, and continuing, patient input in projects.

“Insights from lived experiences are essential at any stage of the patient journey because they reveal the emotional and practical as well as clinical realities that patients face,” she says. “They can really illuminate the realities of navigating the healthcare, management and treatment of a disease and the quality of life points that disease impacts. Those with lived experience know what works and what doesn’t, and having clear, direct conversations with the patient community enables you to uncover these gems that aren’t front of mind for the clinical community. You get a different perspective that is equally as valuable as those from HCPs.”

Precision AQ, a full-spectrum agency that integrates data, evidence and market insights to widen patient access and care, deploys a multimodal approach to insight generation using a blend of qualitative and quantitative methods: one-to-one interviews, focus groups, advisory boards, ethnographic research, video diaries, emotional timeline plotting and social listening.

“Ethnographic research – involving immersive, qualitative exploration of patients’ lived experiences, behaviours and cultural contexts to deeply understand their needs, values and healthcare journey – is a style of research that can reveal real nuggets of gold in a way that focus groups and advisory boards don’t always manage. Participants share their experiences daily via free-flow video diary entries and submitting video footage of live responses to tasks and thought-provoking surprise questions. They also record themselves plotting a visual timeline with an accompanying mood board and personal voiceover of their journey milestones to capture their emotional reactions to the ups and downs of being a patient.

“This type of in-depth research can break down barriers and create an environment for immediate, unfiltered insight-sharing. The video and audio content can create powerful firsthand insights that enable organisations and healthcare systems to tailor interventions that are not only clinically sound, but emotionally and practically relevant, to move from reactive to proactive care, to positively impact clinical trial design, recruitment and retention, and clinical practice, as well as support programmes and educational materials.”

The agency, driven by a mission to empower access to life-changing medicine for all, believes the benefits of patient insights, driven by senior leadership teams, can radiate across an organisation to improve every aspect of the commercial journey.

“We involve the patients as early as possible in projects we undertake and we strive to involve internal stakeholders too. That way, everybody is on the journey from the beginning, ensuring objectives and a clear roadmap are established and projects can move forward in a streamlined, collaborative fashion,” adds Claire. “We do this via our bespoke INSPIRE strategy and by planning interactive workshops with individuals from governance, legal, communications and patient advocacy at global and regional levels, driving a ‘one team’ mentality to deliver successfully against critical strategic imperatives. It doesn’t mean there won’t be hurdles, but they are easier to identify and deal with.”

The challenge is to have a patient-first attitude across all departments, despite different market and clinical demands and regulatory restrictions, she observes. “It is completely understandable that there are different priorities across an organisation, and most companies are doing their best to address this. It will take time for the pockets of excellence to trickle through an entire organisation, which is why this needs to be led from the top. Precision AQ explores this and more in its annual Good Patient Partnership Guide2 – an in-depth listening exercise with a panel of patient groups, advocates and industry partners aiming to inspire meaningful dialogue and progress towards truly patient-centric practices.

“Investment in patient advocacy is an area where it can be difficult to secure budget as patient involvement can be undervalued. A change in perception and attitude about the value that it brings is needed to secure budget, but to do that we need the right metrics and evidence to show how particular patient insights have driven more tailored interventions, enhanced patient-HCP interactions and improved outcomes. The benefits often get missed, but are quantifiable when success metrics are identified at the outset and delivered upon.”

The sector of Patient Engagement is on a journey itself and exploring models of resourcing, funding, measurement metrics and internal culture, but the direction is positive, as Debra Montague, Founder and Chair of the ALK Positive patient group, states in Precision AQ’s The Good Patient Partnership Guide:2 ‘Industry is starting to see the value brought by patient groups that have a much closer idea of what matters to patients and can share this.’

The overarching challenge for industry is not to recognise the benefits, but to embed processes and responsibilities in organisations that are weathering turbulent times and complex, crowded commercial markets.

References

1. https://www.veeva.com/resources/measuring-the-impact-of-medical-affairs-determining-the-quality-and-actionability-of-insights/
2. www.goodpatientpartnerships.com