The Inaugural Society for Participatory Medicine Conference was held in collaboration with the Partners Connected Health Conference in Boston, Massachusetts. Patient Engagement is an area of medicine that is highly developed and patient experience can affect reimbursement rates for hospitals. The misalignment of values and systems in healthcare can mean that Patient Experience isn’t always addressed. The Society for participatory medicine met together to improve collaboration across healthcare systems. Leading Participatory medicine improvement, the society has a panel that addressed the next steps in Patient Engagement.
You can have a great experience, then you find out how much you have to pay.
Leaders in developing Patient Experience held a panel led by Sue Woods, MD, MPH, Founder and CEO HiTechHiTouch, LLC.
Grace Cordovano shared her experiences working with cancer patients and the importance of listening and not making assumptions. Pat Folcarelli of Beth Israel Deaconess Hospital shared their process of creating a system to make patient dignity a priority. They report incidents of lack of patient dignity and address their root causes. Are providers or staff overworked or lacking understanding? Barbra Rabson shared the importance of understanding all the stakeholders in a system and creating guidelines that encourage improved experience.
Barbara Robson, CEO, Massachusetts Health Quality Partners
We have to be careful because the healthcare system has a perspective about what engagement is and it’s not the same as what patients see engagement as. We need to find a design that meets all masters. The co-design phase doesn’t just involve patients. Everyone that is going to be involved as an end user should be involved. The system of co-design has a system of checks and balances that gets feedback about what it’s like to be in the system. Primary Care Physicians had a bad experience treating patients with Chronic pain and those patients felt like they weren’t listened to.
We have been working on a handbook to inform patient engagement. How do we engage in an advisory panel and how to we help prepare our providers to know how to engage patients? We ask what has lead people to feel unprepared to address patient issues.
The system is so rushed that there is almost no time. We need to fix the reimbursement incentives for hospitals to align with the goal of providing better patient experience and allow clinicians to be incentivized for what we want. This will also help solve physician burnout. We are trying to make things move too fast at the expense of quality and focusing on the wrong things.
Grace Cordovano, PhD, Cancer Patient Advocate, CEO, Enlightening Results
My successes come from suffering with the patient. We need to understand what their values are and not assume we understand everything about their lives that might complicate their diagnosis. Patient reported outcomes should be included as part of the decision making process to create a positive experience. A lot of our work happens outside the clinical setting in their homes and in their real lives. Challenges are not limited to medical condition and listening can help clinicians meet those needs.
Doctors routinely prescribe treatment plans that seem to be developed in a vacuum. Some ideal care isn’t covered and looking at treatment plans with cost in mind can help inform what we are investing in. People are becoming more aware of costs. Especially in the Cancer arena people are being more considerate about what those costs will mean personally and for families.
Pat Folcarelli, RN, MA, PhD, VP, Silverman Institute for Health Care Quality, Beth Israel Deaconess Medical Center
What I know about where I work is that every year 3700 times someone calls and says they are having a terrible experience. What we decided to do was treat patient complaints the same way we treated physical harm. We decided to address patient experience. About 10% of those are what we describe as disrespect and of those 20% are quite poor. We decided to tell the story. One of the story was of a patient that went down to get labs done 5 minutes before the lab closed. The door was locked. The lab tech held up their phone to show the time.
The patient came back the next day.
This hospital decided to count preventable disrespect and assign a taxonomy and result. We also need to address what it is about the situation in the lab that lead the employees to feel like they needed to close the doors early. Most of the experience is the result of the systems that we have set up. If they do not support the delivery of care we will have bad results. With an environment of respect we need to improve the Beth Israel Deaconess Experience for providers, staff and patients. Telling the “terrible stories” can motivate change and improve patient experience.
Next Steps in Patient Experience:
Collaborations and Policy help create the future of participatory medicine. The panel experts highlighted that reimbursement does not prioritize experience. Change and system transformation will take time. The Society for Participatory Medicine provides a home for providers who want to involve patients in decision making. Systems that want to invest in the complete health of patients rather than performing medicine on them in the clinic.