Patient Engagement through Internet Research and Clinical Trials: Annual Survey Results

By Hannah Eccard

Inspire delves in to new developments and continuing trends among patients and caregiver members through its new publication, Insights from Engaged Patients. Details from this fourth annual survey of 9489 respondents are available to download below but here are a few highlights to get you started.

Using ICD-9/10 to code members’ interests and health communities, we segmented respondents into health condition groups. The five largest condition groups in this survey were Oncology (i.e. all types of cancer and cancer-related issues), Autoimmune (Rheumatoid Arthritis, Psoriasis, etc.), Metabolic (Type II Diabetes, High Cholesterol, etc.), Respiratory (Pulmonary Fibrosis, COPD, etc.) and Neurologic (Multiple Sclerosis, Parkinson’s Disease, etc.). We also segmented the data across demographic variables: age, gender, and whether the respondents were patients, caregivers or both.

Use of the Internet

Almost all (99%) of the respondents independently research their condition. In addition to using Inspire to understand their medical condition, our members search online for information. When asked to indicate all the sources they use from a provided list, 81% use condition-specific websites/blogs and 75% checked online search engines. Fewer use written materials or in-person sources, for example, only 33% say that they use materials provided from their physicians’ offices and just 20% secure information from nurses. As one participant put it,

“My doctor’s office has pamphlets about my condition that have not been updated in 20 years, so online resources are necessary for me.”

It is clear that members are reliant on the Internet for health information and guidance to understand their medical condition.

Many patients are also using social media to give and receive advice on their condition. Forty-five percent of patients give advice and 41% have requested advice on their health from others on social media. They ask for and receive advice on treatment options, doctors, medical centers, clinical trials and pharmacies.

Clinical Trial Participation

When compared to the less than 5% that the American Cancer Society and others say participate in clinical trials,1,2 Inspire’s membership stands out. Twenty-two percent of oncology patients surveyed had asked their doctors about clinical trials and 15% have participated in clinical trials. In fact, many other conditions had similar clinical trial participation rates.

Taking Medications

Ninety-four percent of the respondents take at least one prescription medication. Yet of those that take prescription medication, 44% indicated that they had trouble paying for treatment and 45% had gone without prescription medications because they could not afford them. This figure is significantly higher than the 21% found in a Kaiser Family Foundation Health Tracking Poll conducted December 13-19, 2016 3 and higher than the CDC figure from 2013 of 7.8%.4 One respondent wrote,

“The cost of medication co-pays continue to increase. Very often I go
without certain medications because I cannot afford them. The soaring
costs of medications is simply ridiculous!”

Another stated that their “prescription coverage changed and excluded [my medication] making it too expensive to purchase.”

Being involved in one’s health care is the new normal for patients and caregivers. They use the Internet to research their conditions, share what they learn on social media and, in the process, they become more engaged and active in their health. There is more to learn from our eBook, Insights into Engaged Patients: An Analysis of the Fourth Annual Inspire Survey.

See our eBook,“Insights into Engaged Patients: An Analysis of the Fourth Annual Inspire Survey”

Download eBook

Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.

References:

1 https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/clinical-trial-basics.html

2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5495113/

3 http://files.kff.org/attachment/Topline-Kaiser-Health-TrackingPoll-Health-Care-Priorities-for-2017

4 https://www.cdc.gov/nchs/products/databriefs/db184.htm

About the Author:

Hannah Eccard
Researcher with diverse experience in quantitative and qualitative research and a unique history of deriving actionable insights through analyzing datasets of 100,000+ data points and delving into primary source narratives. 6+ years designing custom surveys for patient-centered initiatives; specialist in crafting tailored language and utilizing complex logic. 3+ years leading healthcare research initiatives, including research into patient-provider communication, population research and deep-dive analysis into user experience. Areas of expertise include analyzing patient journeys, identifying unmet patient/caregiver needs, conducting message testing and revealing patient perspective in clinical trials.

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