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“Have We Met Your Needs Today?” Patient Centricity is So Much More than a Customer Satisfaction Survey


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In the healthcare industry, “patient centricity” is like comfort food – everyone knows what it is, but it can mean very different things to different people.

Pam Garfield

Pam Garfield, SVP at Patient Health Perspectives, explores how patient centricity can improve trial design and outcomes when embraced fully with commitment to the patient perspective.

In the healthcare industry, “patient centricity” is like comfort food – everyone knows what it is, but it can mean very different things to different people.

The term is everywhere, with forward-thinking and well-intentioned healthcare companies making the conscious decision to shift their focus and commit budget and resources to incorporating the patient perspective into aspects of their business where it has never been before.

Drug and product development is one such area that is striving to define the role patients can play.  Key stakeholders responsible for patient engagement are considering and piloting a number of different approaches. While some progress has been made, a few of approaches are, in my view, too narrow, ultimately limiting the role patients can play and the perspective they can bring to the process.

For example, recently we have seen feedback programs designed to measure patient satisfaction with the clinical trial process.  These are labeled as “patient-centric” programs.  While these programs do by definition focus on patients and patient satisfaction is an important measure, a patient-centric approach requires much more.

Specifically, in these programs we see highly structured rubrics and processes that include qualitative questions about how patients felt about the trial process.  Here are some examples of this type of question:

  • How attentive were the organizers?

  • Did they listen to your concerns?

  • Do you feel they know you and your history?

  • Did they explain the protocol and process clearly? 

These questions sound more like a retail customer satisfaction survey than a patient engagement program.  Read those questions again – you could ask the exact same questions to a consumer who has just completed the car-buying process.

The fact is consumers are inundated from all directions not only with requests for feedback-from hotel chains to insurance companies to the local dry cleaner-but also with pressure to give positive marks. 

According to Jennifer Kaplan writing in Bloomberg Technology, the rapid increase in satisfaction surveys is a result of a convergence of factors, including:

  • A growing thirst for feedback to improve products and services

  • An increasing focus on data

  • The ease of reaching customers via e-mail and text

  • A growing conviction that by rating a product, customers will feel they have stake in it and become members of that product’s “community”[1]

But research shows that consumers do not always appreciate customer satisfaction measurement. They are becoming overwhelmed and fighting back with their silence – Pew Research reports that its telephone poll respondents fell from 36 percent in 1997 to 9 percent in 2012.[2]

In an article in Money titled “On a Scale of 1 to 5, How Much Do You Hate Consumer Surveys?,” author Martha White says, “American consumers are drowning in a blizzard of customer satisfaction surveys, and that’s not very satisfying… if you’re like a growing number of people, you’d like companies to stop asking if you’re satisfied already–especially when they don’t really seem to want to know the truth.”[3]

Patient Engagement Can Change Clinical Trials

With something as personal and significant as an individual’s health, it’s important to dig deeper than just asking how they feel about the experience itself.   This sells the patient centricity movement short.  Patients have so much more to contribute; they can actually improve trial design and outcomes. 

Dr. Matthew D. Galsky of the Icahn School of Medicine at Mount Sinai in New York was quoted in the Wall Street Journal saying, "Perhaps the questions we are asking [in testing new treatments] are not the questions that are important to patients.’’[4]  More on Dr. Galsky a bit later.

Historically, the first point of entry for patients to join the drug development process has been as a volunteer participant in a clinical trial. However, I would argue that to truly impact clinical trials, we should be engaging patients much earlier and asking different questions altogether. For example:

  • How does your disease/condition impact your quality of life and function?

  • What symptoms are most burdensome?

  • What outcomes are most significant?

  • What risks are you willing to accept and for what benefit?

  • What would impact your decision to enroll in a trial?

In a recent study through Health Stories Project, a health information research company and online community that is part of the Health Perspectives Group, we asked 100 patients with chronic diseases what keeps them from participating in clinical trials.  One-third (31%) of respondents said they were too busy and 38% were not sure they could stay on a specific plan.  Both of these data points indicate a reluctance to manage the logistical requirements of a trial, which is something that might be improved with patient input into trial design.[5]

So the question is this: Could more interaction with patients before a trial starts make a difference in patient participation or, even, in what products are developed and how?

Patients say yes.  In the Health Stories project survey mentioned above, an overwhelming 97% said that it is somewhat or very important for pharma companies to include consumer input when designing trials.  In a follow-up survey of more than 300 patients on this topic conducted by the same group, more than 80% of patients felt they could bring value to the clinical trial process and impact a number of areas, including developing research ideas and goals, designing clinical trials and accelerating clinical trial enrollment.[6]

But what contributions could patients actually make to clinical trial design? 

Sometimes, the changes might be small. Something as simple as arranging for a car service to the required trial appointments might make all the difference in keeping patients enrolled.

And, sometimes, the changes are big.  Let’s revisit Dr. Galsky, describing his experience as principal investigator of a prostate cancer trial at Mt. Sinai in a Wall Street Journal article by Amy Dockser Marcus.

Dr. Galsky’s team wanted to test whether patient input was useful to the trial-design process, so they developed this method:

  • First, they designed the trial on their own

  • Then they used a Web-based platform and solicited feedback from patients for six weeks

  • They decided they would consider the process useful if the input led to at least one major change in their design, or three minor changes.

  • In the end, the trial design incorporated four major and five minor changes.[7]

Here’s one example: When the trial protocol was first conceived, the investigators had planned to ask patients periodically about side effects such as nausea. But patient input convinced them to ask additional specific questions, such as how many days patients felt well enough to go to work.

As Dr. Galsky’s team discovered, patient feedback can transform a clinical trial before it even starts. 

And while they used an online platform to gather input from patients, there are other ways to engage with patients as well.

I’m sure you are familiar with physician advisory boards, but the same approach can be used for patients.  Patient advisory boards bring together small but diverse groups of patients to provide advice to the research or study team on a number of key topics.  The meetings can take place in person or via videoconference and team members are invited to provide context and probe on the feedback provided.

But patient advisory boards are just the tip of the iceberg. We segment patient engagement for clinical insights into three categories:

1. Observational

Observational tactics are useful when sponsors are seeking directional research that points them down the right path through data. Directional tactics include social listening, pre-trial surveys and interviews and in-trial surveys.

2. Two-way Dialogue

Projects and programs that enable a two-way dialogue between patients and sponsors are valuable for feedback and pressure testing of ideas and decisions. Ongoing advisory panels that enable access to a larger group of patients over a period of time and one-time advisory boards with 10-12 patients fall into this category.

3. Part of the Team                                                                                                                                                                                              

And finally, forward-thinking sponsors are beginning to integrate patients into the drug development process through protocol co-creation sessions and ongoing advisory councils and by “embedding” patient opinion leaders into the study team. These types of activities allow for a new level of advice and partnership between the industry and patients.

No matter how you go about it, including patients in a significant and meaningful way before and during the clinical trial process can help confirm your thinking is on target or can lead you make changes large or small that make your trial better.  But for this to happen, you need to move beyond asking customer satisfaction questions and instead ask the questions that matter, and then act on them.

Pam Garfield is Senior Vice President, Strategy & Innovation at Patient Health Perspectives, a specialized health communications firm that creates intelligent solutions for health consumer participation.  Pam has more than 20 years of professional experience across a range of fields impacting patients. For more info: www.phperspectives.com.






[1] http://www.bloomberg.com/news/articles/2016-05-04/tasty-taco-helpful-hygienist-are-all-those-surveys-of-any-use

[2] http://www.people-press.org/2012/05/15/assessing-the-representativeness-of-public-opinion-surveys/

[3] http://time.com/money/4317585/consumer-surveys-hate-fatigue/

[4] http://www.wsj.com/articles/design-power-patients-play-researchers-in-drug-trials-1412034067


[5] “Clinical Trial Insights Survey,” Health Stories Project survey, May 2015

[6] “Patient Experiences and Perspectives with Clinical Trials and Patient Groups,” Health Stories Project survey, Feb. 2016

[7] http://www.wsj.com/articles/design-power-patients-play-researchers-in-drug-trials-1412034067


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