Shaping the Future of Patient Advocacy: An Interview with Clinigen's Lorna Pender

In this edition of our interview series with patient engagement thought leaders, we are honoured to speak with Lorna Pender, Patient Group Lead at Clinigen, where she shares her unique perspective on patient engagement. With her background as a former NHS doctor, medical writer, and patient expert, Lorna offers a 360° view on how vital it is to embed the patient voice into the life sciences sector.

Alex: Lorna, what does patient engagement mean to you?

Lorna: To me, patient engagement is both an opportunity and an unmet need. It is also personal, as a patient expert myself living without an effective treatment option for 32 years, I feel patient engagement is vital to ensure we drive patient-focused changes globally; so that no patient in the future has to endure similar diagnostic or treatment access challenges.

It is also my purpose professionally to advocate for inclusion of the patient voice into the life sciences sector. Having spent time as an NHS doctor, and having been a dermatology patient since I was eight years old, a medical writer, and eight years as a medical affairs professional in industry, I feel I have experienced healthcare from a 360 view! Essentially to me, patient engagement is absolutely vital to ensure we deliver not only appropriate diagnostics and treatment options, but also to ensure we deliver a sustainable and ethical provision of research, development and therapeutics.

Without engagement with patients and without the patient voice, we currently see a very small percentage of the world's population actually receive treatments, so we can definitely embed more patient engagement into our sustainability strategies to best direct our investment in the healthcare ecosystem.

Alex: What involvement have you had with patient engagement??

Lorna: Throughout my medical affairs career, I have driven a patient-centric medical affairs strategy, and have had the privilege of partnering with patient organisations and patient experts on a variety of impactful projects that have incorporated the patient voice, gathered vital insights, and rightly so, these insights from patients changed the medical strategy.

There have been a variety of interesting projects including training a patient organisation's nurse call centre team on a new medical device, partnering with a patient organisation on a Delphi panel and HTA submission, consultation with patient experts at conferences, patient focus groups, co-creating patient information materials, and designing research questionnaires for the patient community. I am pleased to also sit on the Patient Focused Medicines Development patient engagement sustainability global task force, where we are leading on the creation of metrics that industry can use to measure the impact of patient engagement. I am also a volunteer NIHR research champion, and I frequently take part in community outreach projects in underserved communities to demystify and normalise talking about research.

Personally, I have enjoyed my own patient expert experiences working with industry and have had the pleasure of being interviewed by my doctor on camera for a pharmaceutical industry-led alopecia disease awareness campaign, I have been interviewed by a number of different agencies and media groups to highlight what life is like with severe alopecia, and I also have taken part in patient councils to advise on the unmet needs of living with chronic eczema.?

Alex: What role do you think patient engagement can play to support pharmaceutical companies’ business goals?

Lorna: Patient engagement has traditionally been viewed as the easiest target for budget trimming, however, globally in the life sciences ecosystem we are seeing growing momentum of purpose-driven organisations and start ups attracting investment due to their patient-centric sustainability strategies; especially since we now know that patient engagement is no longer an investment that is seen as "nice to have" or "optional". This is because we now know that when patient engagement is embedded into the sustainability commitments a business makes, there are strong financial benefits, including boosted profits and 20% increased launch of medicines in development reaching the people who need them the most; the patients.

Promisingly, now we are also starting to see investment firms themselves employ patient advocacy experts to ensure that any investments are made into organisations who are truly invested in engaging with patients, evidenced by their sustainability performance. Investment firms are now essentially holding start-ups, biotech and pharma accountable for their patient engagement performance.

Perhaps the most impactful momentum lies with the current trajectory of life sciences organisations recognising the value of the patient voice as an expertise to match that of clinical key opinion leaders, and encouragingly we are seeing many more patient engagement experts becoming decision-makers and giving the voice of the patient to C-suite executives, and embedding the voice of the patient into the commercial strategy. If more organisations focused on the large medical unmet needs that the patient voice can highlight, there is potential for a more sustainable industry which meets the needs of the patient community.

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Alex: If you had a magic wand, what change would you make to how patient engagement is carried out by the industry?

I would like patient engagement professionals to be promoted as the changemaking powerhouse they actually are, and to be viewed as just as vital as say legal or medical departments. There is a promising growing patient engagement professionalism from the inside of industry establishing policies and governance that guide the interactions with patient experts to establish that patient expert collaborators are just as vital as the industry relationship with key opinion leaders in healthcare.

However, there is a frustration amongst many patient engagement professionals and I have been speaking on the patient panel at Pharmageddon on this very point, to shake up the traditions of old thinking within industry, dispelling the myth that patient engagement is a nice to have "soft" skill that is "not business-critical". I would challenge that and say that industry can really benefit from more inclusive hiring practices, unconscious bias training, and employing more soft skills such as active listening.

Patient engagement professionals also deserve more recognition for the PR, communications and thought leadership activities that are often innovative and bring humanity to the business. To really make an impact internally, it would be great to see more patient engagement leaders embed their commitments to the patient community in the organisation's sustainability commitments, and to have ringfenced investment for evidence generation and gathering the data from the projects to communicate impact. Rejecting or tightening project budgets but still expecting impact data and patient insights is old news now!

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Alex: What top tip do you have for pharma professionals working in patient engagement?

First tip is to really lean on those active listening skills, the patient community will ultimately benefit if you are present in each and every conversation and can demonstrate empathy and openness without challenging their lived experience.

Internally, make acquaintances with your ESG colleagues, organise a workshop, and embed some patient engagement activities into your organisation's sustainability commitments. This will strengthen your patient engagement strategy, and furthermore position your activity to be able to generate evidence and data on your impact right across the business.

Finally, I would say just keep swimming because the tide is strong, there are sharks, but you know the best way home to the patients.