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Patient Engagement Travels: join us to explore this exciting, changing landscape

Patient engagement is the topic du jour. But what is it all about? How is patient engagement being integrated through the healthcare spectrum? Who are patients engaging with, across society? What benefits do they bring? And to start at the beginning, who are patients?

Who exactly are patients?

Patients are people who live with a condition or illness and manage it daily, over time gaining in-depth lived experience and expertise. In a single year, a patient accumulates 8,760 lived hours of hands-on illness management, consulting with fellow patients, undertaking research, and testing strategies on how to cope best. They often take a long and winding journey on the quest to find workable treatments and solutions, learning every step of the way.

By joining forces and sharing insights, effectively banking up hundreds and thousands of hours of lived expertise, these individuals make up communities rich in knowledge. Together with their patient organisations and representatives, families, carers, and members of the public, they can add their voice to discussions that concern them most.

How do we define patient engagement?

The definition of patient engagement is in evolution, as we play with semantics and layers of meaning. In an exemplary, open-access report published in September 2022 by the Geneva-based Council for International Organizations of Medical Sciences (CIOMS), patient engagement or involvement is defined as:

The active, non-tokenistic and collaborative interaction between patients, the patient community and other stakeholders, where decision making is guided by patients’ contributions as partners, recognising their unique experiences, values and expertise.

As this report recommends, it is imperative that patient engagement take place at the early days of any kind of R&D endeavour, and accompany it step by step. The earlier the engagement, the better the results. Just as agreeing on the ingredients before you bake a cake will determine its success. Although spreading on some patient-engagement icing at the end may look sweet, it cannot possibly match the value of early involvement.

Patient engagement is neither fixed nor predictable: “Researching patient engagement is much like trying to describe a rapid mountain river,” says Tamás Bereczky, HIV+ patient advocate, PhD. “You take a snapshot, but as you are analysing it, the setting is changing.”

Yet it is this very flux that makes it exciting and promising.

How does the illness of individuals become a societal force?

To cite a metaphor coined by sociologist in health and illness and patient himself, Prof. Jan Grue: Illness is work. And so this abstract labour the patient carries out while handling their condition will influence their interactions with society. The work of ill people has helped us all, directly or indirectly, such as by raising awareness, helping to raise funds for research, or dismantling stigma.

Which patients are being left out?

The patient voice is, unfortunately, not always at the podium. Patients may be left out, simply because they aren’t speaking the same language as certain decision-makers. Language that is technical or complex can hinder and shut down communication. Standard medical terms used by health providers can feel obscure or confusing to patients and sometimes be difficult to pronounce: dysphagia means difficulty swallowing; dyspnea shortness of breath. Using clear, patient-friendly language can help to bridge the gap.

What about diversity in patient engagement?

Certain groups of patients are less integrated than others – being overlooked or reluctant to step forward. Religious, socio-economic, language, and cultural considerations often compound marginalisation. Research and healthcare haven’t drawn fully on the people they aim to help. Think of Fitbit and similar light-sensor wearables designed to track a person’s heart rate, devices that function optimally only on lighter skin. Consider oximeters, intended to monitor oxygen levels in the blood: similarly imprecise on darker skins. With more racial diversity in the conceptualising, planning, and trialling of innovation, resulting devices will serve more people better.

With whom can patients collaborate?

The scope of patient engagement is broad and deep. Since the early days of grassroots patient activism, such as HIV activists at the headquarters of the FDA and at Wall Street, patients have increasingly found their way to being invited to sit at the table as partners: with researchers and scientists working in medicines R&D, with inventors and innovators, with hospital and healthcare services hoping to better serve their communities, with regulators and health economists approving and then determining the reimbursement of medicines, with national and international governments on public health policy steps needed. And much more.

Almost a decade ago, in May 2013, Tessa Richards, Associate Editor at the British Medical Journal and longstanding patient advocate, and colleagues published an editorial, “Let the patient revolution begin”. This marked the official début of the journal’s commitment to patient partnership, to developing a library of articles on shared decision-making and a strategy to be reflected across the entire journal. At that time, it was radical. A revolution that has paved the way for other scientific and medical organisations to follow.

In what ways does patient engagement take place?

Patient engagement takes place in many forms and levels, in person, and online. The person may start by simply being present at meetings and observing, moving on to expressing views and taking part in discussions, to making decisions and collaborating on projects, right up to leading them. Tangible examples of possible approaches range from basic focus group right up to lobbying for change in policies at governments.

But is patient engagement strictly necessary? Does anything go wrong without it?

Some people find it curious and disconcerting to imagine patients telling scientists what needs doing or how to do their jobs better. Surely scientists know better than patients? Well, sometimes yes, but sometimes no and then joining forces would align the expertise of both parties.

There are cases of research that have gone horribly wrong, if not for intrinsically poor science, for a lack of the grounded input and lived expertise of patients. For example, in 2013 a study was published comparing the attractiveness of women with one particularly severe and painful type of endometriosis versus two other types. While the researchers argued they were seeking related phenotypes, the 300 woman who took part did not know they were being rated for their “attractiveness” on a scale of 5 to 1, or that researchers would be measuring their vital statistics (such as hip, waist, breast, and under-breast circumferences).

Astonishingly, this study gained ethics approval and was publicly funded by a university hospital, via public taxes. Had only a couple of patients been consulted, this study would never have happened. The women would have said: “What we need is ground-breaking R&D, treatments, cures, less pain… not a rating of how sexually appealing we are.” After seven years of worldwide protests from patients, The Guardian reported that the journal article was finally retracted.

What drives patients to jump in with both feet?

As every patient is unique, so are their motivations to take part. Some are catalysed by altruism, others by a desire to influence research so it reflects the needs and concerns of their disease community. Some want to share their expertise to save others from the plight of their illness, especially in preventable diseases, such as by awareness-raising and fighting stigma. Others urgently want to find a cure for their illnesses.

Irish patient expert and artist, Joan Jordan, recently published a powerful blogpost with patient organisation, MS Ireland, foreseeing a cure for her disease:

“Multiple Sclerosis, will I ever stop thinking about you? Will I ever accept you? Will I ever stop hating you? This letter is to tell you that one day, you will be crushed by a cure. You will be a part of history books and nothing else. You will not win! It’s only a matter of time.  … MS, your days are numbered.  You WILL be defeated.”

Where is patient involvement heading next and can I come, too?

There is much terrain to explore: the potential benefits of patient engagement, how to carry it out, where we are heading, and where to draw inspiration and guidance from.

Where do you fit into this? How will you integrate patient engagement in your work? Where do you start?

Join our webinar series: Patient Engagement Travels

At Infinity Communications, we are running a series of webinars called Patient Engagement Travels. We’re exploring compelling themes and case studies, hearing from the patients and topic experts involved. From people who are walking the talk. Join us as we meet patients interacting with key parties:

  1. communities and patient organisations
  2. academia and research
  3. authorities
  4. healthcare innovation
  5. healthcare providers and services
  6. workplaces
  7. pharmaceutical industry and medical devices, and
  8. schools and places of learning.

Watch previous episodes on the Infinity Communications YouTube channel and subscribe for updates.

Contact us at Infinity Communications to stay tuned on the topics we’ll be covering.


Author: Estelle Jobson, Account Director and Patient Lead, Infinity Communications