I have a 50-second elevator speech that emphasizes my dual credentials: I am a 4th-year PhD student at Arizona State University’s Edson College of Nursing & Health Innovation, and I bring to this effort my 22-year history as a cancer survivor and activist.
My research focus is cancer rehabilitation. Research published in 2015 indicates that 90% of cancer survivors who have treatment-related impairments and could benefit from cancer rehabilitation services never receive them. The number of survivors who receive referrals within a year after acute treatment ranges between 2%-9%1. The numbers haven’t change significantly in the last few years. My survivor community is dramatically under-served. My research is dedicated to understanding why this gap exists, and how to connect survivors to the services we need.
Research Clearly Defines the Problem and the Solution.
I intended to frame the gap in services in terms of social determinants of health: the association among lack of access to treatment, lack of insurance coverage, and logistics of getting to and from appointments within the constraints of work and life roles. I thought we, as researchers, had provided conclusive evidence that pointed to the solution: bridge silos of care to increase referrals and access to treatment,2 and fix insurance billing practices that leave survivors with the financial and time burdens of treatment.3. So why weren’t healthcare providers paying attention?
Analyst, and author Paul Cairney changed my understanding; I was the one who wasn’t paying attention. In his slim and insightful volume, The Politics of Evidence-based Policy Making (2016), Cairney described my plan for the future with uncanny accuracy:
The evidence-based medicine (EBM) agenda is to (a) gather the best evidence
on health interventions, based on a hierarchy of methods which favors,
for example, the systematic reviews of [randomized clinical trials] RCTs,
and (b) ensure that this evidence has a direct impact on healthcare practice,
to exhort practitioners to replace bad interventions with good, as quickly as possible.4
He’s right. Until now, I thought my role was to focus attention on the clear and overwhelming evidence. My big question was, “Which is the most efficacious approach?” Should my evidence convince oncologists to re-engineer the referral process? Or should my evidence show administrators they were leaving piles of insurance money on the table?
Cairney’s Logic Stopped Me Cold.
He pointed out that what I have failed to understand is the real world of policy. I have assumed, incorrectly, that5
- Scientists and policymakers share the same hierarchy of evidence.
- Research evidence has a direct effect on administrative policy and practice.
- Researchers, using scientific and professionally driven criteria, are in the best position to identify the most appropriate solutions.
Cairney speaks directly to people like me who equate the production of scientific evidence as the key to policy advocacy. He isn’t subtle. In his Preface, he joked about his preferred title for the book: Evidence-Based Policymaking: If You Want to Inject More Science into Policymaking, You Need to Know the Science of Policymaking.6
Cairney describes overwhelming benefits if healthcare researchers invest time in learning how evidence does, or doesn’t, become policy. His aim, he writes, is to draw insights from policy theory and to challenge scientific advocates to recognize these insights when engaging in the policy process.
Policy theory, Cairney suggests, addresses the reality of policy making7: In the real world, the evidence is contested, the policy process contains a large number of influential actors, scientific evidence is one of many sources of information, and policymakers base their decisions on a mixture of emotions, knowledge, and shortcuts to gather relevant evidence7.
Cairney issues a challenge to advocates like me. If we want to build a meaningful platform for change, accept these realities8:
- Even if “the evidence” exists, it doesn’t tell you what to do.
- The demand for evidence does not match the supply.
- Policymakers make choices in a complex policymaking system in which the role of evidence is often unclear.
Cairney’s analysis is accessible but it requires patience. He starts with the literature of scientists who identify barriers to policy implementation from the perspective of their research evidence. It takes time to explain to scientists that the conclusions of current policy scholarship reveal how differently scientists and policymakers understand and use scientific evidence.9
The richness of Cairney’s approach for healthcare advocates
is his development of two, dramatically different, case studies.
The first is the success of tobacco control, and what it tells us about what it takes to move from evidence to policy. The second is the world of implementation science, its focus on organizational policies, and its emphasis on bottom-up implementation in order to generate local ownership of policy solutions for specific groups.10
1 Pergolotti, M., Lavery, J., Reeve, B. B., & Dusetzina, S. B. (2018). Therapy caps and variation in cost of outpatient occupational therapy by provider, insurance status, and geographic region. American Journal of Occupational Therapy, 72, 7202205050. https://doi.org/10.5014/ajot.2018.023796
2 Buchman S, Evans JM, Mackinnon M, Gradin S, & Wright FC. (2018). Bridging silos: Delivering integrated care to patients with cancer in Ontario, Canada. Psycho‐Oncology, 27:2673–2676. https://doi.org/10.1002/pon.4858
3 Djalilova, D., Mandolfo, N. Berger, A., & Cramer, M. (2019). Policy analysis of access to and reimbursement for nonpharmacologic therapies for cancer-related fatigue. Public Health Nursing, 36: 545-550.
4 Cairney, P. (2016). The politics of evidence-based policy making. Palgrave Macmillan, Springer Nature. p.52.
5 Cairney, P. (2016). p.52.
6 Cairney, P. (2016). p.ix.
7 Cairney, P. (2016). p.42.
8 Cairney, P. (2016). p.42-43.
9 Cairney, P. (2016). p.54.
10 Cairney, P. (2016). p.55.