Patient engagement – a journey of health activation

Decoding genomics, unmasking the intricate mechanics of cancer cells, innovating R&D processes and injecting AI with transformative potential are the gospel of current and future health.

They command attention but their true impact still requires the elusive grail of patient activation – the incantation to bring forth dramatic improvements in healthcare and its delivery.

With it, every compound of scientific and medical advance becomes freighted with a huge potential – without it, the ability to enhance outcomes and efficiencies can wither.

Activating patients – supporting them to develop the knowledge, skill, confidence and opportunities to take a bigger role in managing their own health – is a critical exercise in creating a harmony across the often discordant physiological, psychological and practical pulse points of the patient journey.

For decades, healthcare systems around the globe have been grappling with how to energise patients to become involved in their health so that systems can transition from expensive reactive care to more manageable preventative models. Its importance is underscored by World Health Organization directives and endorsed by policy shapers around Europe.

The UK NHS’s grand Fit For the Future ten-year plan, announced in July, is laced with prompts and pledges to propel patients along engagement pathways to boost their personal health and ease tension in the organisation’s ever-climbing budget. But questions remain about whether it goes far enough and fast enough.

“I think the first thing to understand is that people are not deeply involved in managing their health until they become unwell and, generally, they then start from a place of not understanding very much,” says Professor Alf Collins, NHS England’s Clinical Director for personalised care from 2016 to 2023, and now part of the Personia Health consultancy that has developed evidence-based tools and techniques to support patient engagement and improve health outcomes when it comes to engaging with medicines and vaccines.

‘Research has shown that improving patient activation levels can encourage adherence and lifestyle changes’

“Self-management is the default system we are aiming for and if we can support people to improve their activation levels they can have better quality of life and their care will cost less. The problem is that, broadly speaking, the support systems to enable that are not in place.

“If you want the NHS 10 Year plan to be successful then patient activation has to be the central cultural shift. It has to be the primary culture of the NHS to succeed. As the plan states, the ‘power to make the healthy choice’ needs to become the core mission for the NHS.”

Professor Collins, who has researched and published widely on self-management support, shared decision-making, patient activation and patient engagement, believes a full understanding and acceptance of the scale of the task of engaging with patients – between 25% and 40% have low levels on the Patient Activation Measures scale – has to be a fundamental tenet of sustainable care.

Patient activation components such as signposting, incentives, peer support, social prescribing and accessible services have to be well resourced in terms of budget and facilities, while a coaching ethos – that mentors, not hectors – has to be established to trigger meaningful patient involvement, he observes.

“The compelling arguments for this have been around since the 1990s but progress has been slow. However, the opportunities to improve patient activation are exciting as long as systems are designed to be engaging, particularly for those who don’t want to think about their health,” adds Professor Collins.

“It means developing a health coaching approach to support people on a journey of activation, signposting them to self-management programmes, information about peer support and strongly encouraging them to take it up, along with improved social prescribing that gives people access to local support groups and programmes. There is an understanding of what is needed but getting it built into pathways is hard.

“Integrating it into digital infrastructure is also important but the digital voice has to be engaging for the core of the population who are not that actively involved in their health. The challenges are tough but the opportunities are there.”

Research has shown that improving patient activation levels, graded in four stages, can encourage adherence and lifestyle changes but it has yet to become a mainstream element of healthcare.

Becky Paul, business director at Bionical Solutions, believes that pharmaceutical and life sciences companies can bring critical influence in realising the potential of preventative care. “Pharma has a huge role to play, particularly through supporting HCPs who are time-pressured and burdened, so it is about providing bite-sized educational material that can be shared with patients,” she says. “We have moved on from a time when there were lots of field teams out there and there was a high frequency of noise in engagement, often at the expense of meaningful discussions – it is now about a more considered, thoughtful, intelligent approach.

“It’s taking that step back and looking through the lens of HCP and patient needs, understanding what they need and their behaviours in order to then provide relevant information to share with them, rather than a ‘one-size-fits-all’ approach to everything.”

Bionical, a digital technology company that uses its industry experience and innovation to drive engagement and change, collaborates with pharma and life sciences companies and HCPs to initiate patient action that leads to improved outcomes. “We want to support our clients by providing solutions that will bring insights and therefore need a deep understanding of HCPs and patients – what they need, what are their challenges, where they are on their journey – and we do that with personalised, digestible, interactive material that can be digitally disseminated easily,” adds Becky. “Our platforms provide options for HCPs to create materials for their own patients or co-create with a pharma company’s representatives. It takes the brand and messaging out of the loop for a little while to build a shared understanding by focusing on the patients, and adding value to HCPs, supporting them in a safe, effective and non-invasive way.

“Adding value without being branded takes a dose of bravery but it builds trusts and relationships, and confidence in the company because it is seen as supporting patients in a time of need, rather than being seen as just pushing a product.”

Bionical, which provides digital platforms with motivational messaging and appointment scheduling across smoking cessation, weight management and mental health initiatives as part of the NHS Prevention Programme, as well as working with pharma, reports that 84% of HCPs are more likely to engage with reps working with a Bionical programme because it maximises the likelihood of focused conversations about the patient.

“One of our UK programmes has been used by our sales team with over 1,700 physicians to reach more than 40,000 patients with customised literature,” adds Becky. “The end goal is always to support patients to be educated, knowledgable and motivated so they can be empowered to self-manage where possible. It helps them and helps the NHS by reducing repeat footfall in clinics, non-compliance and non-adherence. Patient activation, in my mind, has to be front and centre of everything we do, because if we can get that right, then it has a positive effect on healthcare and our industry.

“There is optimism that we can make significant progress and use digital tools available to help patients, particularly those with low activation scores, rather than bombard them at the start of their journey. There is a great deal of pride in following this route because getting just one or two pieces of information to patients can change their lives for the better. We have helped HCPs identify patients with rare diseases, who might have gone undetected as previous methods were labour intensive. In my mind that, right there, is a reason to be invested in patient-centricity and activation.”

Kay Wesley, CEO of Kanga Health and a digital communications pioneer across consumer and healthcare, believes industry should use its resources to wrap services around patients to catalyse greater activation.

“We prefer the term ‘patient engagement’ to ‘activation’ – we should have a service mindset,” she says. “We should be about delivering a whole product, which is wellness, above selling a product. Patients want services that help them and it is incumbent on industry to listen to and understand their needs.

“Industry as a whole needs to be more patient-centric and willing to provide more tailored solutions for the medicines themselves with wraparound services. The journey of each patient is unique so the challenge is to recognise that and customise services accordingly.”

Kanga, which specialises in developing digital strategies that ‘uncover, meet customer needs and deliver on them’, has in-house experience from banking, FMCG, media, travel and automotive sectors as well as Top Ten pharma companies that enrich its healthcare-industry vision and strategies.

Kay highlights a Kanga engagement project supporting a company with a gold standard product in IBD that was experiencing patients switching away from its therapy because of flare-ups. She says: “Working with the patients, we discovered that the drug was not the problem but rather work, lifestyle and time factors, so we built a service that helped with those issues and they stayed on the medicine. The company could have easily built an adherence app that probably wouldn’t have worked but if we really listen to patients, truly understand their concerns and show that we care about their outcomes, it becomes more than just the drug. This approach pays reputational and economic dividends.

“Another company was concerned that a new drug in their rare disease area was about to be launched and wanted to keep its patients and HCPs loyal. We listened to them and created an unbranded platform across 20 countries that dealt with lifestyle factors using videos of existing patients sharing personal experiences. This was a company putting its patients first and, despite some early internal scepticism, it connected with and helped their patients who then had no reason to switch. The new product was launched and failed to encroach on its business, and the existing company’s share price and its economic performance improved as a result.

“We are in a golden age of digital services – which is why big tech companies are so keen to move into healthcare – so pharma companies have to understand that patients can metaphorically and physically click away if they don’t receive something of value straightaway.

“Compliance makes some companies hesitant but there are plenty of ways of walking through the compliance jungle. Involving all departments at the start of any project is effective because people involved in medical and legal approval care about patients and their outcomes and the companies that do well in this era have that inclusive mindset.”

Kay recognises the organisational and budgetary challenges of taking patient engagement to the next levels but observes: “I think there’s an opportunity to deliver platforms that are much more interactive, that are much more engaging, that automatically takes patients down more tailored journeys rather than standardised insights.

“With AI and other tools, we have the opportunity to deliver personalised services for patients, which will make them more engaged and, in turn, result in better outcomes for that individual, better outcomes for the company and for healthcare systems.”

Danny Buckland is a freelance journalist specialising in the healthcare industry