Planetree Tool to Explain and Invite Patient Partnering Published in BMJ

The BMJ has just published, as a response to a British Medical Journal editorial, An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage.

This short document, of which I am listed as a co-author, explains the concept of patient engaged care, describes and briefly summarizes the Planetree – National Academy of Medicine framework synthesis of the research into the impact of this approach, and perhaps most importantly, then specifically welcomes and invites patients to become engaged and partnering team members.  (Note that my blog, attempting to summarize the very rich and detailed original Planetree-NAM paper, into which I had some input, is here.)

The BMJ response includes our offered model “Dear Patients & Families” letter, which could be used by medical institutions to explain, welcome and support full engaged participation.

For example, it references and summarizes the research as follows:

The good news is that research shows that patient and family engaged care leads to better relationships between you and your healthcare providers. It helps keeps patients safe. It reduces healthcare costs and keeps people from being unnecessarily readmitted to the hospital. Patient and family engaged care makes healthcare staff feel more connected to the work they do, which makes for a better experience for everyone.

Some of its specific invitations  and suggestions to patients are as follows:

  • On your next visit to your healthcare provider, ask them if they have seen the framework for patient and family engaged care. If not, direct them here: https://nam.edu/pfec.
  • Ask your healthcare provider if there is a way for you to be involved in improving care. For example, ask if they have a patient-family advisory council.
  • Ask to be part of the organization’s leadership or government team. Ask if patients are included as board members, for example.
  • Ask to be with your loved one at all times, if they want that. Question why there are restrictions to visiting patients. If having visitors is not beneficial to your healing process, enlist the support of your care team to set parameters for guests.
  • Ask that a Care Partner or family member be present and engaged for all conversations about your health.
  • State your feelings. They matter just as much as your physical condition.
  • Get involved in research. Ask about how your condition is being studied and how you can help.
  • Let your care team know how you like to receive information.
  • Ask to see and contribute to your medical record. If you don’t understand what you read in your medical record, ask questions until you do.
  • Tell your care provider what your health goals are – in your own terms (for instance, being able to walk up a flight of stairs, being able to play with your grandchildren without getting winded, etc.)
  • Come to doctor’s appointments prepared. Bring a notepad with questions, your medication list and any other pertinent personal healthcare information.
  • Create a medical biography about yourself. What conditions and medications have you had in the past? What are you currently experiencing? What are your goals for the future?
  • Act like you belong. Be a teammate, not a subject.

I think the last one, “Act like you belong. Be a teammate, not a subject,” sums the whole approach up perfectly.

I very much hope that medical institutions will want to include this letter in their intake, on-boarding process for new patients, and to encourage staff to use its suggestions as a framework for discussions with patients about a team approach and its specifics. It, together with the underlying NAM framework, could also be an excellent too for staff training at all levels on how not just to have an engagement discussion, but to make all discussions team discussions.

If this approach because a standard in most institutions, then we will truly be on the way way to a greatly improved system.

P.S. Working with Planetree on this has been a great honor and opportunity.

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New Hopkins YouTube Video, Patients on “What I Wish You Knew…Sharing Perspective from the Bedside,” Has Many Potential Uses

The new Hopkins video on the expectations of patients will be a powerful tool.  As the link says:

Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes. Respect, communication, and partnership. These wishes embody the building blocks of patient and family centered care and they serve as a daily reminder to ask ourselves as providers, are we meeting these simple needs to show we care?

As an Oncology Council member who was somewhat involved in the drafting of the list, it really struck me how simple, but massive, the patient “asks” are.  Respect, communication, and partnership.  Of course, the process of gathering these ideas was itself an important clarifying project.

It is my understanding that the video had been primarily conceptualized as a tool to educate doctors and staff.  I would add that, perhaps with some additional framing, it could have great use as a patient-education tool, with the goal of raising expectations among patients.  Such framing might start and end with the hospital making commitments to, and and asking for help from patients to achieve, those commitments, including of course, being explicit when the goals are not met.

We certainly spend time in waiting rooms, when we might be watching videos such as this.  Moreover, as more of the appointment notification and reminder system moves online, why not include links to video like this — ideally with mention of specific steps that patients with improvement ideas might take.

Framework for Patient Engaged Care — Important Analysis and Tool

The National Academy of Medicine/Planetree paper, whose full title is Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care, represents in my opinion a major step forward in building the knowledge base and strategy for changing the entire medical culture.  (Disclosure, I contributed some input into the paper.)

I think it is important to give the full text of the first paragraph of the abstract, since it is such a useful manifesto for the whole patient partnering/engagement movement.

Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. This vision represents a shift in the traditional role patients and families have historically played in their own health care teams, as well as in ongoing quality improvement and care delivery efforts. PFEC also represents an important shift from focusing solely on care processes to aligning those processes to best address the health outcomes that matter to patients. In a culture of PFEC, patients are not merely subjects of their care; they are active participants whose voices are honored. Family and/or care partners are not kept an arm’s length away as spectators, but participate as integral members of their loved one’s care team. Individuals’ (and their families’) expertise about their bodies, lifestyles, and priorities is incorporated into care planning and their care experience is valued and incorporated into improvement efforts.

One of the greatest values of the Paper is its synthesis of a Guiding Framework.  This provides a way both to understand how change can be made to happen, and a structure in which the research in support of the change to patient engagement can be organized.  In other words, the paper is highly ambitious.  It tries to create a theory of change, and then look at the state of the research assessing each of the elements in that theory.  Moreoer, it is careful to include in the inventory and analysis a broad range of studies, not just the most formally structured ones.  Such a document obviously will have huge impact and multiple roles going forward.  Here, in one graphic, is the entire Framework.  (This copy has the citation embedded on it, for appropriate sharing.)patient-and-family-engaged-care-a-guiding-framework

I have to admit that the first time I looked at the above Framework I had some difficulty grasping its overall structure.  But, actually, it is quiet simple.  Basically, the idea of the flow for a strategy for change, from left to right, is that:

  • The Organizational Foundations for cultural change are Leadership, and certain levers such as Assessment and Change Champions;
  • That the Strategic Inputs into culture change are Structures, Practices, Skills and Awareness Building, and Connections;
  • That the Practice Outputs sought are Better Engagement, Experience, Decisions and Processes;
  • and that the Engagement Outcomes (meaning I think the outcomes that are sought to be the final product of the engagement culture) are Better Culture, Lower Costs, Better Care, and Better Health.

In other words, you need what is on the far left, to do what is in the column to the right of that one, and so on.  Obviously, the real world is more complicated, and the arrows at the top attempt both to emphasize the direction of the logic and to capture some of that nuance.

What the Paper then does is for each of the areas and elements summarize the research in support of the impact and role of that element in the overall framework.  So, for example, Outcomes are discussed at pages 5-8, Foundations at pages 8-9, Strategic Inputs at 9-15, and Practice Outputs at 15-17.  There are examples of successful innovations falling into each of the elements throughout the text.

Based on this breakdown, the Paper then identifies those areas for which the research evidence is solid, as follows:

Within the strategic inputs section, there is a well- established research base for environmental features in support of PFEC. This evidence supports the need for a physical environment that increases family presence (Choi and Bosch, 2012), improves communication (Ajiboye et al., 2015; Rippin et al., 2015), improves sleep and relaxation (Bartick et al., 2009; Bauer et al., 2015), and may help reduce infection (Biddiss et al., 2013). See Box 9. Krumholz’s work (2013), however, demonstrates that the creation of a healing environment requires more than environmental enhancements; it also requires the reengineering of care patterns and systems that have been part of business as usual for years in health care, but that may potentially be compromising the well-being of patients precisely at times when we are trying to get them well. This work posits that by proactively addressing common environmental stimuli (like alarms, light exposure, etc.) and psychological stimuli (like forced fasting, pain, anxiety, and uncertainty), hospitalized patients’ physical and mental well-being will be better, which will result in a positive impact on their symptoms, function, and quality of life.

A number of studies were identified in support of the practices section of the framework. In particular, organizations embarking on the implementation of practices to facilitate shared decision making (Arterburn et al., 2012; Barry et al., 2008; Bozic et al., 2013; Elwyn et al., 2012; Ibrahim et al., 2013; Stacey et al., 2014; Tai-Seale et al., 2016; Vero et al., 2013), family presence and involvement (Coleman et al., 2006, 2015; Luttik et al., 2005; Meyers et al., 2000; Rosland and Piette, 2010; Rosland et al., 2011), advance care planning (ElJawahri et al., 2010; Volandes et al., 2013), and compassion in action (Del Canale et al., 2012; Hojat et al., 2011; McClelland et al., 2016; Mc- Clelland and Vogus, 2014; Rakel et al., 2011) can do so supported by research suggesting the potential of these strategies to drive improvements in outcomes. Pairing these scientific studies with practical implementation resources will be an important strategy for responding to two common sources of delay when it comes to PFEC implementation: the dual questions of Why do it? and How to do it?

Finally, the evidence in support of training to expand partnership capabilities of health care personnel suggests this as an important area of emphasis when building a culture of PFEC. Training in empathy, communication, and patient education emerged with a strong basis in empirical evidence (Atwood et al., 2016; Phillips et al., 2014; Riess et al., 2012; Tai-Seale et al., 2016; Wexler et al., 2015).

An Appendix provides cross references to research in support of each of the elements (pages 30-31).

Perhaps even more important for the future, the Paper also identifies those areas in which the research foundation is less solid:

The corollary area of emphasis—training to expand partnership capabilities of patients and families—is not as well supported. Logically, philosophically, and conceptually it seems apparent that we cannot rely on patients and families to inherently have the capacity to actively participate in their care in a system that was designed without them, and that they need support to build that skill set. However, evidence is lacking to back up this common sense assertion. Furthermore, despite the evidence supporting clinical training in ef- fective communication strategies to engage people to participate in decisions about their care, gaps persist around how to efectively engage patients and families to inform care delivery and design.

This research gap naturally extends into the connection-building activities in the framework, with only a few studies identified in this preliminary review to demonstrate the impact of such efforts to bridge the divide between how health care professionals are prepared to interact with patients and family caregivers in a way that supports their involvement and how the latter are prepared to engage.

In addition two other areas of particular need were identified, the impact of structures that specifically promote openness and participation among patients and caregivers and the relation of connection-to-purpose inputs, i.e. the impact on team members of their experiences of participation on the actual outcomes.  Moreover, the Paper notes that research on patient engagement in research (which I have blogged about, also here) is in the very early stages.

Finally and most importantly, the Paper as a whole very effectively makes the case for the solidity of the research support for patient engagement (or patient partnering, as I prefer to call it,) and the Paper can and should be cited for that proposition at both the general and detailed levels.

I will be thinking more about the multiple ways that this Paper and the research behind it can be used by varied stakeholders, and look forward to sharing those thoughts.  I, and I am sure the authors, would welcome such feedback.

This should be seen as a movement, not a funding initiative, and this step will prove important in creating the intellectual structure that will ensure its ongoing viability and success, regardless of the short term environment.

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An ER Specially for Cancer Patients — Created Thanks to Patient Partnered Input

A couple of days ago, I had an acute pain incident and was trying to decide if it might be heart or stomach related — either a possible but probably not likely byproduct of my medical situation and treatment.  I (correctly it turned out) did not call in because I did not want ER hassle.  But now I know that my hospital, Hopkins, has a relatively new service that would have fit the bill — and indeed one set up at the urging of a fellow member of the  Hopkins Oncology Patient and Caregiver Advisory Council.   The Cancer Urgent Case service is described in an article in the Baltimore Sun, here by Meredith Cohn.

Most cancer patients going through treatment struggle with pain, fevers and nausea, sometimes severe enough to send them to the emergency room.

But the chaos of the emergency room and related stress are “an assault on your well-being,” said Richard Dean, who took his wife many times while she was battling ovarian cancer six years ago. He told Johns Hopkins Hospital officials they needed an urgent care center especially for cancer patients.

“Anyone who gets cancer discovers it’s just a messy disease,” Dean said. “Your white blood count runs down, you get a fever, and you’re at really high risk for infection and you go sit for hours in a waiting room with a bunch of kids with the flu.”

Hopkins listened and, using some patient data crunching from Dean, who teaches engineering at Morgan State University, launched a cancer urgent care center in 2014 in space adjacent to where chemotherapy is delivered. The Hopkins center is open 12 hours a day during the week and plans to open on Saturdays starting in March.

The center now sees about 10 patients a day — about 3 percent of those Hopkins treats for cancer on an average day — and most go home after a few hours.

“We knew sending our patients to the emergency room was not in their best interests,” said Sharon Krumm, director of nursing administration at the Johns Hopkins Kimmel Cancer Center. “If they have a heart problem or a stroke, yes, it’s a good place for them, but that’s not what was happening.”

The urgent care center’s patients don’t just get better, more efficient care, Krumm said. A study released this week suggests that avoiding hospitalizations is significantly lowering costs for patients and reducing the burden on the health care system.  .  .  . Hospitalizations accounted for up to 46 percent of the patient’s bill. The study found that among a group of patients at Hopkins, the average number hospitalized was cut in half after the center opened.

The article concludes with a great explanation of the need for patient partnered care.

Dean said his wife always wanted to be at home in her own bed in Columbia. Now serving on the Hopkins Patient and Caregiver Advisory Council, Dean crunched patient data to suggest how many beds the Hopkins center would need and how it should be staffed.

His wife died before the Hopkins urgent care center opened. But his daughter Samara, who also was diagnosed with ovarian cancer, has visited the center.

Dean called it comforting just to know the center was there and looks forward to it adding weekend hours. He’d also like to see community hospitals pool resources to support a center if they can’t manage one on their own.

“Patients and caregivers really become the experts on what it’s like to live in a system,” he said. “I have great regard for the folks at Hopkins, but they don’t have the eyes that I have. When you’re in the system you can see the gaps. And now a big gap is being filled.”

As described in the article, there are now ten such cancer urgent care centers in the country. What we, as patients, need is so different from general ER services — and not just a shorter wait.  Our needs are more focused, more comprehensive, and with different likely tests upon arrival.  Interestingly, upon arrival we probably often present as much less urgent than others arriving.

The potential impact for this kind of service is graphically highlighted by a recent story in the New York Times about the emerging knowledge of the risks of immunotherapy.  One individual’s story, which would surely have been very different with a capacity like the one described above is detailed here.

Mr. Peal, an engineering technician who tests the performance of helicopter parts, started taking nivolumab and ipilimumab [new immunotherapy drugs] on July 8. Dr. Kluger [at Yale] told him he might feel drowsy or nauseated, or he could get a rash. A rash indeed struck with a vengeance on Aug. 30: red welts from his knees to his waist. On Sept. 1, a Thursday, he visited Dr. Kluger’s office, where he was given a steroid.

The next day, he had a fever, nausea and was “dying of thirst — like beyond being in the desert,” he said. He threw up everything. His girlfriend, Jo-ann Keating, called Dr. Kluger’s office, and an on-call doctor prescribed an antinausea drug. Later, Ms. Keating called back to say it was not working, and he was prescribed a second antinausea drug. By Sunday morning, Mr. Peal, unable to move, took an ambulance to the emergency room.

In his wallet, he kept an information card published by Bristol-Myers Squibb. It lists dozens of risks, including that the therapy “can cause serious side effects in many parts of your body, which can lead to death.” Mr. Peal’s family told the emergency room doctor about the treatment, Ms. Keating recalled.

“The doctor kept on saying he was on chemotherapy,” she said. “I said, ‘They’re calling it immunotherapy.’ He went on his phone and started looking for information.”

But even Dr. Kluger’s experienced team, which answered the distressed phone calls that weekend, was caught off guard and did not react immediately to the symptoms.

“It took us by surprise. He looked absolutely fine on Friday,” Dr. Kluger said. Part of the problem, she thinks, is that Mr. Peal was relatively new to the clinic, and so she and her staff members did not have the experience with him to accurately assess his symptoms. “It also happened very quickly. It spiraled within hours.”

Ultimately, Mr. Peal spent 24 days in the hospital, where trouble mounted. First his pancreas failed, then his bowels inflamed and his kidneys became dysfunctional, and “to top it off, he has a fever of 103 for which we can’t find a source,” Dr. Kluger said in an interview during the crisis. She was trying to figure it out and had emailed other experts around the country to see if they had ever had a patient with this combination of acute immune reactions. No one had seen it before.

Even without a formal new service, its clear to me that those in research trials should have not-understood side-effects responded to quickly, in case they escalate.  I would think that protocols for this should be established or rather tightened.