Many pharmaceutical companies invest heavily in their patient engagement strategy; however, within the industry, the holistic aspects of patient care are often overlooked.
Although the term ‘patient’ is appearing more frequently in projects, it is still often used as a blanket term with an assumption that every patient is experiencing and managing the symptoms of a condition in the same way.
Importance of patients as individuals
Thinking of patients holistically means thinking about each patient as an individual; a person with his or her own medical history, desires, values, family situation, social circumstances and lifestyle, all of which play into his or her experience of a health condition or disease.
In a clinical environment, it is easy to assume that treating or curing the physical symptoms of a disease is the priority for a patient. However, for some people the impact of managing a condition, personally and emotionally, can be a greater concern than the condition’s impact on their physical health.
Holistic needs and healthcare
Many healthcare professionals acknowledge this notion now. There is a realisation within healthcare that clinical expertise is at its best when combined with an understanding of what it is like for people to live with a condition.
Within some disease areas, holistic needs are considered an important part of treatment plans. Alongside clinical appointments, patients are offered a holistic needs assessment, followed by a referral to the appropriate services, including emotional and financial support. This offer comes from a better understanding of how a disease and its treatment can impact many other areas of the affected patient’s life.
Carers
When we consider patients holistically, it is important not to forget about the carers. This means giving thought to the impact a carer can have on a patient’s experience, as well as understanding how taking on the role of a carer can impact that person too.
The patient’s ability to manage a disease, as well as holistic needs, can be influenced heavily by the presence of a carer; however, carers may face many challenges in being an effective partner in disease management. Therefore, where possible, pharmaceutical companies should be including carers in their patient engagement initiatives.
Holistic needs and COVID-19
The COVID-19 pandemic has further highlighted the importance of addressing patients’ and carers’ holistic needs. It has become more apparent that there are many factors that feed into patients’ and caregivers’ health and well-being. Isolation and reduced support from external carers, family members and friends, financial concerns and increased emotional stresses are just some of the many factors that have impacted people’s ability to manage their health over the last six months.
For the best health outcomes, patients need to feel empowered to manage their health and overall quality of life. This is increasingly important at
a time that patients are experiencing limited access to healthcare facilities and face-to-face touchpoints with healthcare professionals.
Effective patient information and support resources that are accessible and resonate with the patient community will play an essential part in supporting patients to remain active partners in their health management.
Patient advocacy
Patient advocacy groups (PAGs) and charities have always been good at acknowledging and addressing patients’ and carers’ experiences of managing their health. This can be attributed to their long-standing tradition of involving patients and carers in content and service creation. Co-creation has meant that their support resources seek to reflect and address the experiences of a range of real people affected by a condition.
A recent survey of patient groups in the UK found that the majority of organisations have seen an increase in demand for services since the start of lockdown. This has led to PAGs acting quickly to adapt services to suit the evolving needs of their target populations.
Many PAGs were quick to understand that the pandemic will be felt by patients for many months (and possibly years) into the future, and acknowledged the importance of understanding what people with ongoing health conditions need so that they could respond appropriately.
Patient expectation
PAGs and healthcare organisations are not the only key drivers behind holistic health. Individual patients are more motivated than ever before to address the spectrum of their needs. Changes in healthcare mean that patients have a greater expectation that their holistic needs will be addressed as part of their care, with more opportunities to ensure this happens.
There have been many health campaigns that have aimed to raise awareness of the importance of emotional and mental health. These campaigns have helped the public develop an understanding of how lifestyle factors and emotional health can affect general well-being and the ability to manage other health conditions. This has prompted people to become more self-aware and open to discussing their broader needs.
This growing awareness means that it has never been more important for pharmaceutical companies to be patient-centric, rather than product-centric, and to demonstrate this clearly to patients. The current changing healthcare landscape should be viewed as an opportunity to build patient involvement into the development of communications plans and support resource design (or redesign) to ensure that we create a sustainable system that’s fit for the future.
How can pharmaceutical companies do this?
Incorporating the patient perspective into a communications plan involves engaging with patients and carers to truly understand their experiences – from pre-diagnosis all the way through to ongoing management. There are many effective ways of uncovering these insights (including patient advisory boards, patient surveys and focus groups), but building relationships with PAGs is often a good starting point.
We have already acknowledged that PAGs have a thorough understanding of the experience of their patient members, and they exist to improve this experience. Their strong relationship with the patient community can help pharmaceutical companies access and engage with a large and diverse platform of patients to gather insights that truly reflect the experience of the wider patient community.
How does this benefit the pharmaceutical industry?
Addressing patient expectations will help pharmaceutical companies create more holistically effective therapies, develop targeted tactical interventions to meet the needs of their target populations and help to evaluate current patient information and support offerings. Beyond this, there are real benefits for pharmaceutical companies investing in a better understanding of all aspects of the patient and carer experience.
The public are sometimes suspicious of pharmaceutical companies, due to the industry’s reputation for being solely business- and product- focused. Taking the time to understand the patient experience and using this insight to create meaningful patient engagement outputs is a
great way of showing commitment to patients and their well-being. It could help build trust within the industry and improve relationships between pharmaceutical companies, patients and PAGs.
Working closely with patients will generate more and richer insights into their behaviour patterns, such as how lifestyle may affect treatment adherence, which side effects are the most problematic for patients, and how patients and carers themselves want pharma to help them overcome these challenges.
Healthcare technology assessment agencies and payers are increasingly prioritising effectiveness outcomes that encapsulate a more complete understanding of the patient experience. Holistic care programmes that help patients better manage their lives with their disease will drive increased access and reimbursement.
What does this mean for pharmaceutical companies?
In summary, to make holistic needs a priority, pharmaceutical companies need to start investing in understanding all aspects of the patient and carer experience, planning time for this at each stage of the patient pathway. The most effective way of doing this is to work with patients, carers and PAGs to gather insight about the patient and carer experience.
Uncovering the issues and concerns patients and carers may have about managing a disease and how this fits into day-to-day life will help companies produce effective engagement and management tools based on the specific needs of the target group.
Companies need to make sure they have staff experienced in patient engagement and content creation. At Nucleus Global we have a dedicated patient engagement team with expertise in needs analysis, engagement strategies and patient content development. Part of our quality assurance process includes working with patients and PAGs to gather insights and review our patient engagement materials.
We have the Nucleus Global Patient Engagement Panel, made up of a network of patients, PAGs and lay reviewers to support this important area of work. The group helps us to ensure that we are creating patient- focused content and programmes that are relevant, engaging and accessible while meeting the needs of the target patient population.
Investment and structural changes like these may sound like big business decisions, but there are small changes that companies can make to think about patients more holistically. Awareness of the many ways a diagnosis of a condition can impact a person – physically, emotionally and socially – is a good start. Changing how we talk and think about patients can make a surprisingly big difference to patient engagement outputs.