Mapping The Patient Information Journey

Marie Ennis
5 min readSep 23, 2021

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Patients make the best decisions when armed with the right information.

Patients need appropriate information tailored to their specific needs at each step of the care pathway. This should begin on the day of diagnosis and continue through treatment and long-term self-management.

Research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making.

Shared decision-making (SDM) is the conversation that happens between a patient and physician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests.

Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. There are a number of tools available to support the SDM process such as information sheets, DVDs, interactive websites, cates plots or options grids.

A 2012 Cochrane review found that patients who use decision aids improve their knowledge of their treatment options have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making.

It’s important that the information you receive is tailored to your age and specific needs. When I was diagnosed with breast cancer, the information I was given wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease.

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not kept pace with your increased needs.

This is the point where many patients turn online to seek more information.

While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online.

Increasingly patients are turning to their peers online, using social media to seek out the experiences of other patients to help guide their healthcare decision-making.

Reading information in a brochure doesn’t compare to the ability to interact and ask questions on a social networking site. Ex-US Department of Health and Human Services Chief Technology Officer, Susannah Fox, has labelled this trend as “peer-to-peer health care”.

She observed how “people living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge”.

This model of seeking and sharing information online has given rise to a new breed of expert patients — the ePatient.

Dr. Tom Ferguson who coined the term used it to describe patients who are “smart, motivated and experienced with an impressive and up-to-date knowledge of the best resources, centers, treatments, research, and specialists for their conditions.”

Once the initial diagnosis stage has passed, and you are moving through and beyond treatment, your information needs will also include everyday coping tips and long-term strategies to manage your care.

This is where peer-to-peer support is particularly helpful. Research conducted by the Pew Research Center shows that one in five Internet users have gone online to find others who might have health concerns similar to theirs.

That percentage is even higher — one in four — among those living with chronic disease, or caring for someone with a disease.

Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family, and other patients for day-to-day advice, and emotional support is higher. Dr Ferguson observed, “when it comes to aspects of illness that some clinicians may consider secondary — such as practical coping tips or the psychological and social aspects of living with the condition — some experienced (ePatients) can provide other patients with particularly helpful advice.”

It has been over a decade since I was first diagnosed with breast cancer. Today as I look back on how far the journey has taken me, I can chart my progress towards becoming a patient advocate through the quality of the information I received along the way.

My progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches and patient peers online.

Now I have become the person sharing my experience to help others along the pathway.

And I am not alone.

By sharing your journey too, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis or learning how to cope with an illness, its treatment, and long-term care.

We have a wealth of hard-won wisdom and information to share, so let’s share generously with others who are just starting out on their own patient journeys.

Ask yourself who can you help today?

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Marie Ennis

Healthcare Communications Strategist | Keynote Speaker | HIMSS FUTURE50 Awardee