What Do Patients and Stakeholders Want to Know? An Update from the Field

An interesting thing happens when you ask patients and other members of the healthcare community which questions they’d like to see PCORI translate into its calls for research funding support. They tell you.

Back in September, we launched a "Suggest a Research Question" feature on our web site. It’s part of our ongoing effort to fund research that addresses questions for which patients don’t have the answers they need, so that they, and those who care for them, can make better-informed health and healthcare decisions.

As we promised when we announced this initiative, we’ll carefully evaluate each question we receive through a standardized selection process to determine how it might fit within our portfolio of patient-centered research. Over time, this process will lead to a series of targeted announcements for research funding as initiated by patients and other stakeholders. The response has been dramatic -- 462 questions within the first eight weeks. So as submissions continue to roll in and our evaluation process takes shape, we thought we’d step back a bit and see what we can learn from these questions even as more continue to come in.

We were pleased to find that about 60% of those questions address issues that fit comfortably within our five National Priorities for Research  – such as those about how to assess prevention, diagnosis and treatment options, improve healthcare delivery, address disparities of all types, improve how research is communicated and disseminated, or improve the research process overall.

Studying some of these questions might well yield results that would quickly help patients and clinicians make better health and healthcare decisions. A few examples of questions we've received are below. We've not yet determined whether these represent substantial research gaps and thus need further study.

But they are indicative of the level of careful thought that those submitting questions to us are giving to this effort.

• Is MRI better than mammography for detecting breast cancer?
• What is safer and more effective for my early-stage prostate cancer: open surgery, robotic surgery, radiation, radioactive seeds or watchful waiting?
• Is minimally invasive surgery with 3D image guided navigation for spine fusion better than standard open procedures?
• What medical procedures get the best results for back pain (physical therapy, chiropractic, drugs, surgery etc.)?

We also were pleased to find that the questions patients and stakeholders are submitting represent many different diseases and conditions. In fact, almost all categories of the ICD-9 classification of diseases were represented in the sample we studied. The categories most represented in this initial phase were diseases of the nervous systems (which includes Alzheimer’s diseases, Parkinson’s disease, and various types of pain), neoplasms (including many cancer-related questions) and injuries and poisoning (including trauma).

The wide range of clinical areas represented in the questions we’re receiving is matched by the diversity of stakeholders submitting them. All categories of healthcare stakeholders are represented. Patients, caregivers and clinicians constitute the majority of respondents, a welcome finding given our desire to hear from those on the front lines of health and healthcare decision-making so that we can be responsive to their needs for relevant, useful research. But we’re also hearing from other important constituents such as clinician associations, organizational providers, industry, and patient advocates.

Note: Because many submissions were coded multiple times, the numbers in the chart at the right will add up to more than the total number of questions submitted. We’re also seeing a high degree of geographic diversity among those sending us their questions. All regions of the United States were represented in our sample, although the large number coming from the South likely reflects the fact that Washington, DC, is considered part of that region. Still, the overall picture suggests widespread interest in and demand for this approach to gathering questions that could lead to formal research studies.

What’s next in our effort to fold stakeholders’ questions into our research funding process? We’ll continue to gather questions, so please keep sending them along, and urge your friends and colleagues to do the same. At the same time, we’ll be working to refine our process for sifting through and evaluating these questions to determine which will be considering for funding, and developing an efficient process to let people know the status of their question, and when they can expect to hear back from us.

We heard loud and clear at our patient engagement workshop in October that patients and other stakeholders want to work with researchers to see that their questions can effectively guide our decisions on funding research that makes a difference in the real world. We plan to work diligently to keep facilitating that dialogue. We hope you’ll be a part of it.