Patient Engagement Survey Results

The healthcare system is moving towards care models that embrace a more patient centered care approach. Meaningful Use rules, Accountable Care Organization (ACO) and Medical Home care models all include patient engagement as a key part of their programs. Oncology advocacy organizations are also embracing patient engagement as an important part of patient centered care, with new Commission on Cancer guidelines and ASCO’s Accelerating Progress Against Cancer blueprint both featuring patient engagement as key parts of future cancer treatment programs. In all instances, Health IT plays a central role in connecting patients to their health care team, their health information, and enabling them to be more engaged in their care.

But what do patients want? Are they interested in engaging in their care? We conducted a survey* of 295 cancer patients and found that a large majority, 72%, were interested in using online tools and resources to help manage their care and recovery.

Different Levels of Patient Engagement

When asked what specific tools and resources they were interested in using, a large majority of cancer patients showed interest in passive engagement, while almost half expressed interest in more active engagement. From the survey:

  • 77% are interested in reading cancer education materials online from expert sources.
  • 74% are interested in having access to their medical records securely online.
  • 47% are interested in recording their symptoms and side effects during treatment in an online health journal.
  • 46% are interested in using an online guide to help them plan for their doctor visits.

patient engagement survey: how patients want to engage

This data shows that patient engagement can’t be lumped into one catchall category; there are different levels of engagement that patients are willing to participate in. What we’ve labeled passive engagement are activities that could be described as lean back activities, reading information and gaining knowledge. Active engagement activities can be described as lean forward, where patients are entering data, tracking their health, and providing feedback to their healthcare team.

This has peaked our interest to delve further into the levels of patient engagement to see what differences there may be between actively engaged and passively engaged patients during their cancer journey. If one set of behaviors results in more positives than the other, how can we encourage those behaviors?

Desire for Education

When asked about specific activities, 75% of patients expressed interest in learning about their condition, treatment options and side effects. When asked about specific education topics, learning about survivorship and how to prevent a recurrence was the number one subject cancer patients wanted to know more about, with 80% of survey respondents expressing interest. Rounding out the top 5 topics of interest is:

  1. How to Prevent a Recurrence (80%)
  2. Nutrition (76%)
  3. Side effects – what to expect and how to manage them (73%)
  4. Treatment options – surgery, chemotherapy, radiation, etc. (66%)
  5. Personal experiences from other survivors (51%)

patient engagement survey: top education topics

As the survey captured responses from patients that were pre-treatment, in treatment, and post treatment, the ranking of the responses varies slightly when filtered for where patients are in their cancer journey. For example, when we filtered the responses to remove patients who were post treatment, the most popular education topic was nutrition, instead of survivorship, with 83% expressing interest. We will incude more findings from patients that are pre-treatment and in-treatment in the March issue of Oncology Business Review (OBR).

Interested in Using Health IT

Patients have shown a strong desire to be engaged in their care, especially in learning about treatments, side effects and nutrition. They also showed a strong interest in accessing this information online through Health IT.

When asked about specific Health IT features, the most popular item patients wanted was having access to their test and lab results, with an overwhelming 88% selecting this option. The other top features patients were interested in include:

  1. Access to test and lab results (88%)
  2. Secure messaging with their doctor and healthcare team (77%)
  3. Having access to their medical records securely online (74%)
  4. Requesting and scheduling appointments (72%)
  5. Requesting prescription refills (68%)

Patient Engagement Survey: Top Health IT features

One of the biggest concerns we’ve heard from practices about adopting Health IT is the fact that cancer predominantly affects an older population, and that elderly patients aren’t comfortable using the Internet. We’ve found the opposite to be true, with 71% of our survey respondents over the age of 55, and no significant difference in the responses when we filtered the answers for this population.


Cancer patients want to be engaged in their care, with some more active than others in their level of engagement. At a minimum, the majority wants to learn about their condition, treatment options, and how to manage side effects, while having access to their health information including tests and labs.

Oncology practices are on the fast track to adopt certified EHR and patient portal technology to provide patients with access to their health information, but not all solutions have features to engage patients in their care. We’ve developed our Patient Engagement Portal to go beyond just providing access, to engage patients with personalized educational resources and care management tools so they can be active participants in their care, without placing an extra administrative burden on healthcare staff.

Our survey shows patients want to be engaged in their care, now it’s up to healthcare providers to take advantage of the tools and resources Health IT provides to make it easier and more efficient to do so.

*Survey conducted via email in June 2011 and January 2012 of cancer patients pre-treatment, in treatment, and post treatment with a 95% confidence level and a 5.5% margin of error.

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