7 Questions: Amy Ohm on making health social for patients and carers

pharmaphorum spoke to the founder of online community Treatment Diaries about what inspired her to set up the forum and how it is helping patients.

How is TreatmentDiaries.com aiming to help patients and caregivers?

Treatment Diaries is an online patient community providing a place for patients and caregivers to anonymously share their health journey via a personal and private diary. Through being anonymous and individuals' willingness to share a personal story, the platform connects many thousands of individuals around the world looking for those on a similar path, who can provide insight into resources, treatment options and outcomes. It brings personalised adherence, compliance and disease awareness materials to them, getting them more involved in their care and aiding greater adherence.

Keeping it private empowers the patient to tell the entire story and knowing the entire story allows the market to play a more active role in the overall wellbeing and health of the patient, improving outcomes through disease education and extolling the benefits of treatment adherence.

What barriers are there to social interactions upon diagnosis?

Inability to communicate, fear of showing vulnerability and a lack of knowledge all work against patients and caregivers in the desire to be social about their health.

The forum aims to simplify the complexities around health, anticipating needs and making it personal. As patients, often we don't know what we don't know, which can feel overwhelming, isolating and often just plain scary. Knowing what to expect and understanding options through accessing the individual experiences of others is beneficial. Patients who play an active role in their health by sharing their own journey are demonstrating a high degree of motivation to be well and adhere to those things that will make them well. This can help others who are following these personal stories and witnessing behaviours that are positive despite the fact that the participants are contending with illness.

How is social media influencing improvements in patient outcomes?

Social media in healthcare is a growing trend, with patients wanting to take an active role in their care. Evolving online patient communities and related technology mean people are connected to their care and can access information about their health from anywhere, from anyone and at any time. The market is able to satisfy this expectation and personalising the approach keeps the patient engaged, confident and in control.

There are numerous positive outcomes and improvements as a result of sharing among individuals. A patient who can be social is taking the first step in assuming an active role in their health. Connecting with those who have similar experiences who are willing to share builds knowledge and the confidence to take action, building towards maintaining healthy behaviours despite living with a chronic condition.

What benefits are there to making health social?

Immediate knowledge and connections. Knowing more about a diagnosis from a fellow patient and/or caregiver brings peace of mind and the courage to pursue the clinical perspective with a care team. Patients trust patients and are willing to tell all. Keeping our questions to ourselves or limiting our communications to a professional care team alone can be isolating. Adding the layman's version of the truth around life with an illness is beneficial, improving the care team's ability to treat the patient as well as the patient's confidence in embracing treatment.

Outside of treatment, what types of support benefit a patient most?

Patients require different forms of support at different stages, from time of diagnosis, to treatment and for managing life going forward. Emotional support can come from family, friends and social networks. In general, people who care about the patient can lend a helpful ear, personal experience and encouragement. Practical support answers the need for help with daily tasks (i.e. money, groceries, day care, laundry). Information sharing is another form of support; patients feel more in control of a situation when they understand their circumstances and options. In summary, patients benefit most from people, support and an understanding of how they all work together to improve a health-related experience.

What is your approach to partnering with pharmaceutical companies?

We see numerous opportunities to partner with pharmaceutical companies on the educational front, meeting patients with the information they need to navigate an illness with a personal and private approach. Being privy to the concerns voiced around the changes in health care and the effect on the confidence of patients and caregivers offers an opportunity to recognise and address these needs. Understanding patient needs on all levels will continue to positively impact how the market place and healthcare professionals deliver care in a personalised and proactive fashion.

When we know how a person is navigating a health crisis and how they are reacting to treatment, we can offer solutions that will improve outcomes, encouraging adherence and compliance. Increasing consumer focus will be critical to the evolving healthcare marketplace and key to the long term and mutual value derived from personalised care.

The thought leaders in this area will transform patient engagement and care delivery. By inviting the market and pharmaceutical companies into their care experience, patients can influence improvements in how they navigate their health and overall wellbeing.

What did your cancer diagnosis teach you about surviving?

My diagnosis is a constant reminder of my mortality, the value of life and the endless necessity to help others. I suddenly found myself alone and afraid, searching for hope and the chance to beat cancer. It taught me to fight and never give up and to have faith. I learned about humility, courage and how, with the support of other cancer warriors, we can beat the odds and inspire others to do the same. As a result of this life-changing experience, I strive every day to advocate for patients and caregivers by giving them a platform to connect and access to the resources they need most to live well despite having an illness. Treatment Diaries provides the anonymity to bare your soul and the cathartic benefits that come with being social about the topics with which we struggle most.

About the interviewee :

Amy Ohm is President & CEO of Treatment Diaries. She is a cancer survivor and business professional whose personal experiences uncovered a need to keep personal health experiences private while looking for ways to make things social for individuals newly diagnosed or living with an illness. Amy was inspired to create Treatment Diaries, an online patient community linking personal health, privacy and social communication.

Amy is committed to making the Treatment Diaries experience lasting for those in need of support - where they can make authentic, quality, life-long and, if they wish, anonymous connections, and inspire others to live life to the fullest.

She has a background in software marketing and is a graduate of California Polytechnic University, Pomona.

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