Notes from BCAN Think Tank Day 2

2017 BCAN Think Tank Day 2

Engaging Patients in Research, presented by Angie Smith, Assistant Professor, UNC Chapel Hill.

“Patient engagement is the blockbuster drug of the century.” Three objectives: Patient centered outcomes and its interaction with patient engagement; types of patient research; and future plans.

Patients want to know the benefits and harms of research; how it’s going to affect their lives; stakeholder perspective.

Patient engagement is necessary in a meaningful way throughout the research. They are not lab mice.

Prep phase: select questions that have meaning to the patients. The execution phase (randomized or not) can affect recruitment, data collection, and analysis of results.

Translational: disseminating the results – can benefit by using the patients to publicize the results and better ensure that that the study is used.

Groups like this – including patient advocates – help guide the proper research questions. BCAN’s patient survey network helped prioritize the studies. Step 1: recruit patients and caregivers to join the patient survey network. There are more than 26,000 in in BCAN Inspire community. Step 2: Generate and prioritize the research questions from the surveys, then narrow them down to 3-5 per disease stage. Researchers should listen to patient stories and turn them into questions. Step 3: Survey sent to BCAN to validate our process. We did that in two different years and got three times the participation on the second time. Step 4: Disseminate the research questions to universities, BCAN, funding agencies.

Prorities: PCORI 2017 put NMIBC on the chart for priorities for the first time. PCORI disseminates $1.6 billion in funding.

Future: continues PSN growth; bi-annual research prioritization; patient empowerment through education. PEER: Patient Empowerment through Engagement Research has been funded for several years, getting patients on research teams.

As health care providers, we need to hear about what research questions are important to the patients, and have that guide our efforts.

Save the date: BCAN Leadership Summit: Washington DC, Oct. 13-14.

Renate Louwers, BCAN Patient Advocate

Renate lost her husband to bladder cancer in 2014. She’s a voice for metastatic bladder cancer patients and caregivers. Patient forums such as ispire.com provide a lifeline to patients. They are willing to provide the “soft skills” that are so helpful. Researchers should consider reaching out to those communities.

Implementing Patient Reported Outcomes (PROs) into Clinical Practice, by Dr. Ben Brooke, a vascular surgeon at University of Utah. Sometimes the medical team is happy and the patient feels poorly. The model for measuring quality of healthcare – Access, Structure, Purposes of Care to clinical outcomes and patient experience. The patient experience is being factored into Medicare reimbursements. It’s important to know. PROs are and report of a patient’s health states that comes directly from a patient without interpretations of the patient’s response by a clinical or anyone else.

So how do clinicians make PRO outcomes more useful to us? PROMIS: Online repository of validated instruments to measure assessment of patient status. Lots of different measures. Why use it? It provides standardized measurements across different domains and diseases. IT’s “cross-walked” to other measurement. They are reliable and valid. They are inclusive, and flexible and efficient. CAT (computerized adapted testing) changes the subsequent questions based upon the prior responses. That helps make it more user-friendly.  

Health Information Technology (HIT) lets patients provide information on their own computers or phones. Some institutions hand each patient an iPad with their data on it, and also surveys, and additional information. The measures are real-time loaded into a patient’s EHR (Epic) and can be reviewed by the clinician. It can be customized based upon PROMIS factors to meet the patient’s needs. It takes less than 4 minutes average to complete the entire analysis.

Data shows that mets cancer patients who receive automated PRO assessment had a better outcome, including greater long-term survival. (JAMA 2017). PRO for bladder cancer exist and could be implemented by your practices. The BCI – bladder cancer index – can provide better tracking of patient outcomes.

Patient-Reported Outcomes: Sharing Data Across Healthcare Systems, by Danielle Lavallee, U Washington. PROs are increasingly common, but there are issues in translating it across different healthcare systems. Insurance companies are requiring this. It’s complex. Knowing what to measure and how to measure is important – before the medical intervention and up to 2 years after the intervention.

Too often, electronic health records don’t link up to each other. There are tools available to now do that, and make the data available in real time. Clinicians can use dashboards that pare down how their patients are doing. It also helps aggregate data and see how institutions are doing. The ability to compare outcomes needs to take into account the patient data and improve the care. “Systemness” for PROs is the goal – to use the data to help improve every aspect of the system. There are diverse needs to measure for patient, provider, system, and reimbursement. Each of the metrics exist, but there are slight differences. Knowing how to capture and apply this data is critical. Example: level of alcohol abuse may not be documented in charts, but relevant to a surgeon.

Multiple stakeholder themes: workflow; IT systems; reduce the burden (keep it under 5 minutes), etc. There are lots of challenges: policy vs. practice; research vs. routine care; how to capture the data and how it changes the workflow; Electronic Health Records (EHR’s) are not patient centered or integrated across organizations.

Opportunities: It’s still early. The environment is changing quickly. Dynamic environment. Unified stakeholder needs. Collaboration to support success: clinics, social workers, etc. The value of PROs for health care increases as we increase the ability to compare outcomes.

Breakout groups

I attended the Survivors Working Group. We zeroed in on three topics to work on over the next year:

1.      Update and enhance information in BCAN Support and Discussion Groups. 

2.     Improving patient access to understanding clinical trial options. BCAN’s clinical trial dashboard can be improved by helping sift through the options.

3.     Travel guides for traveling with ostomy pouches, preparing a summary of information from reputable sources. TSA information is available here and here. 

SWG members will self-select and join the working groups that are of interest, pick your leaders, set your agenda.

In the afternoon, Bob, Marge, Nancy, Jennifer and I ducked out of the main session and conferred about revamping the BCAN Volunteer and Resource Guide, and internal guide provided to patients and caregivers who agree to take phone calls from people who call into BCAN seeking guidance.