Saturday, August 9, 2014

International and Patient Centred Care Conference #5

From Partners in Care to Partners in Research –Sue Sheridan, Director of Patient Engagement at PCORI

I have been following the development of PCORI from afar. PCORI is the Patient-Centered Outcomes Research Institute.

What intrigued me was that here was  a body focused on supporting consumer priorities for research and had a core criteria of involving consumers as partners in the development of the research questions, on the research team, analysing results and disseminating the findings. This is really good. At HCCA we are involved in some research but see that this is a real area of need.

So, I was really pleased to hear from Sue Sheridan, Director of Patient Engagement at PCORI about their processes, some examples of research projects and what they have learned along the way.

Participation in research is different to participation in care. We certainly find this and it was really good to hear Sue Sheridan say this right at the start.

What follows are my notes from her talk. 

So what is patient engagement in research? Created by the Affordable Care act and will only fund research where there are patient partners on the teams, design the questions and with outcomes relevant to patients. Patients don’t read the Lancet and JAMA show do we share evidence?

COPD patient didn’t follow the instruction on O2 use and so was re-hospitalised as he didn’t understand the importance of using it, how to order it.  So the research is looking at devloping consumer materials and then measureing if peer intervention improve outcomes.

End of life care and support, John Hopkins. Mother developed research question, she lost her child and her mother at the same time and realised that there were discussions that did not happen yet they were critical. PCORI funded this project.

How can you improve outcomes by tapping into the experience of people living with these conditions? They are recruiting via facebook and social media.

Patient and family centred research – policy – evidence based patient and family centred care – improved outcomes – form a pyramid with the research at the bottom and improved outcomes at the top.

Research has not answered many questions that patient face. People want to know which treatment is right for them. Patients need information they can understand and use. PCORI focusses on comparing interventions (eg, visual assessment with Bilirubin test for jaundice)

Sue Sheridan shared a story yesterday about her experience with her son. Today she spoke about her husband falling through the cracks in his cancer journey. I appreciate her generosity in sharing these stories. When her husband was presented with treatment options for cancer the neurologist  gave them two options: Gamma knife or cyber knife –but he could not say which was more effective or which option was best? They do not know what difference. One was available locally, the other involved travel to California. There was not evidence at the time to indicate which technique had would lead to a better outcome for her husband. So, as she said, they opted for "the cyberknife beacuse the name was cooler". I just googled this and the first thing that came up was gammar knife of cyber knike - what's the difference? 

Patient engagement in the design and conduct of research offers a greater likelihood of influencing research to be patient centred, useful and relevant. It establishes trust and a sense of legitimacy in its findings. It will lead to successful use and uptake of research results by the patient community

We have lived experience and we know what is important to us. Our data is our currency. Consumer groups are coming together and agreeing to share their data with researcher to make a difference. And patients have connection to other people and online communities. Patients can open the world up to researchers not only for recruitment but also dissemination of results.

Patients contribute lived experience of condition or disease and we can help to shape questions that are important to patients and outcomes that are important to us, such as quality of life. Patients focus on patient centeredness, ethics, safety and urgency.

PCORI have five criteria, three relate to robust science method but the other two relate to patient centeredness and patient and stakeholder engagement. PCORI has engagement officers to ensure that the projects are achieving the milestones for patient centred care and stakeholder engagement. Authentic and meaningful engagement and doing as much as they can to lead to patient centred research.

The Rubric: They have delivered a rubric that spells out what patient engagement looks like. It also identified principles that apply to each aspect: planning the study, conducting te study, disseminating study results and PCOR engagement principles. For example in conducting the study: How best to disseminate information about mental health in the Arkansas delta. They changed the way mental health was spoken about as this is perceived as something for crazy people. So they changed it to emotional wellness.

She also spoke about a project in New Mexico – where there are high rates of substance abuse and PTSD. Peers are delivering a program called Seeking Safety to the mental health community. And area under-served. One part of the community is seeing a psychiatrist and others are seeing a peer. So is it effective? They are comparing the delivery of the same tool.

Co-learning Kelly Young Patient partner with Rheumatoid Arthritis. Patient are often experts in their diseases but we are experts in our experience and this is invaluable to the project. Find a research that wants your input and your presence. You will both learn each other’s language. there is a blog post on the PCORI blog about this also. Well worth reading.

One of the benefits of PCORI is that they are challenging deeply held beliefs about expertise. There are really three critical roles that need to be recognised: Researcher, Patients and Clinicians: As the rubric is developed there will be more examples of partnering with patients and also clinicians, as their voice is needed as well.

They are coming out with a statement on fairly reimbursing patient partners. This was a message from consumers to flip the funding and not just provide funding to universities and medical centres.


Pipelines to proposals PCORI has created a three tiered approach. Tier 1 pipeline. Pipelines to proposals – fund a patient $15,000 to find a researcher. What are the outcomes important to patients in rural Wyoming with Parkinson’s disease? Young woman in Seattle looking at preterm births. Making sure that HIV patients make their appointments. And there are many projects online that you can read. The application is 8 pages and uses lay language. It is a nine month project. It has potential to move into Tier 2 and then Tier 3.

Great work and exciting to watch.

Darlene Cox
@darlenecox

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