Guest Blog From Jill Harrison of Planetree on PCORI Research Participation Toolkit — The Time Has Come!

Editor’s Note: Thanks Jill for all your work on this project:

In the two years spanning Planetree’s project to understand how patient-family advisory councils (PFACs) engage in research, we have come to understand some of the key barriers experienced by patients and family members.  This project, which was funded by an Engagement Award through the Patient-Centered Outcomes Research Institute (www.pcori.org) involved focus groups with more than 21 PFACs around the country in a variety of healthcare settings (ie.- hospitals, nursing homes, drug rehab treatment centers, behavioral health communities, outpatient surgery centers, etc.).

What we learned is that patients and families still exist on the periphery of healthcare research.  That is, research undertaken to improve their lives, decision making, and health outcomes is often inaccessible to them.  Published research is made available through subscriptions to medical journals that are not affordable for individual consumers.  For example, one patient described finding a research article that she thought could help her understand her treatment options, only to discover that she was unable to see more than the abstract.  “If I wanted to read the entire thing, which I did….it was going to cost me $49 to buy it.  I don’t have that kind of money.”

When consumers were able to access publicly available research findings, they described being overwhelmed with jargon and statistical analyses that were difficult to understand.  “Maybe there should be some kind of summary for patients that tells us what the research was about and how we can use the information,” suggested a patient.  Some funding agencies, such as PCORI, and research journals are starting to require consumer-friendly summaries from researchers, but they are still the exception, rather than an industry rule.  PCORI is focused on supporting “research done differently.”  Patients and families in our project agree that the time has come.

Note:  Well said.

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A Toolkit for Patient Involvement in Research

Plantree has just released a very nice toolkit for PFACS and others who want to increase patient engagement in research at all levels.  Here is the link.

Here is the table of contents:

toc

It is just so clear to me that research that includes the patient perspective will be far better — if only because it will help ensue that the outcomes measured are those that matter to patients as well as reserchers.

Disclosure, I helped and get an out-of-date photo in it!

A Study of Why People Choose Assisted Suicide Has Important Lessons for Patient Partnering

An important article in the Washington Post should trigger some thoughts.  As the article explains:

But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising: The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.

The study, based on information from Canada’s University Health Network in Toronto, represents all 74 people who inquired about assistance in dying from March 2016 to March 2017. Most were white and were diagnosed with cancer or a neurological disorder like amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

“It’s what I call existential distress,” explained researcher Madeline Li, an associate professor at University of Toronto. “Their quality of life is not what they want. They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be.  .  .  .  One of the main things these patients bring up has to do with “autonomy.” It’s a broad philosophical concept that has to do with being able to make your own decisions, not being dependent on others, wanting to be able to enjoy the things you enjoy and wanting dignity.

The article cites several other studies that come to similar conclusions.  My first thoguht that the pain issue is easy to grasp, and a clear and dramatic focus of fear for anyone who thinks about it.  My own, perhaps overoptimistic view, is that it is a very rare case in which pain can not be satisfactorily managed provided you have access to the right experts.

But it is not the case that giving people a reason to want to live is viable for everyone.  It depends on the person, on what gives them identity, purpose and satisfaction.  If that is taken away, why on earth stay here, unless you are forced to.

When my sister, back in 1977, when given the news that (at 25) she was indeed dying of melanoma, and quickly, she asked our family physician what would happen if she asked for help dying.  His response has stayed with me all my life:  “That would mean we had failed you.”

That response works at the pain level, but it obviously works at the purpose and satisfaction level.  I would suggest that those dealing with those of us in decline should think about how to start conversations on what provides that satisfaction — and what might provide it as capacities decline.  Hopefully there is then time to learn to take please from things that have not previously given the same pleasure or purpose.

Indeed, the earlier the discussion starts, the better, and it should not be put off until the only short term outcome is death.

 

NPR Piece on Value of Patient Input Into Research Design

Jill Harrison of Planetree pointed out this nice piece on NPR on the value of bringing patients into the research design process.  It reports on a study testing the approach of classifying and treating malignancies by genetic type rather than initial site.  The report says that the study is having great success in participant recruitment in part because its design incorporated the patient voice.

.  .  .  [T]he researchers who designed the study stopped to ask what would appeal to potential participants. Nancy Roach, a longtime patient’s advocate who lives in rural Oregon, got involved early on, and helped advise the scientists planning this study.  .  .  .

“This is going to sound goofy, but my dad was in advertising,” she tells Shots. “Remember the scrubbing bubbles — Dow scrubbing bubbles? That was my dad. So I grew up watching commercials and thinking about what consumers wanted.”

Roach brought that sensibility to the conferences where the NCI-MATCH trial was being designed. The original plan would have split the study participants who seem to be doing well on the test treatment into two groups. One group would continue the treatment; the other would take a break, called a drug holiday.

I’m not a scientist. I’m not a clinician. I’m there on behalf of patients.” Roach remembers her immediate reaction to that design: “Taking a patient who’s responding to treatment and taking them off treatment? That is not going to fly.”

She correctly anticipated how patients like Nancy Nahmias would have reacted, as they deliberated whether to sign up for the trial.

“I would not have liked that,” Nahmias says. “If it seems to be working, let’s face it, I don’t want to do anything to sabotage myself.”

Dr. Peter O’Dwyer, a University of Pennsylvania oncologist who was involved in the study design, readily admits that “the design had certain attractions, but it clearly had certain flaws.”

As the patient advocate Nancy Roach, points out:

From Nancy Roach’s perspective, it takes a bit of nerve to speak up in a room of doctors and scientists and ask, “Will the results of this study actually help anybody?”

But it’s Roach’s responsibility to ask those basic questions. “I’m not a scientist,” she says. “I’m not a clinician. I’m there on behalf of patients.”

In order to ensure clarity about the extent and stage at which the patient input occurred, I reached out directly to the researchers for some additional information.  This was their response:

Patient input was part of the process from the outset, when the NCI-MATCH trial was still only a concept. A group of cancer research advocates and patients, including Nancy Roach the person quoted by NPR and several others, discussed the pros and cons of the scientific rationale for the “drug holiday” in detail with study leaders, among  various approaches. It became clear that the patients and their advocates were not in favor of this approach. As a result, the idea was abandoned and did not become a part of the trial design, which proceeded to formal and final review by federal regulatory authorities, including the NCI Central Institutional Review Board.

 

NQF Advanced Illness Care Strategies Webinar On March 15

The National Quality Forum Issue Brief, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care, which was issued late last year after work involving a large Action Team, brings together six different areas of need and discusses the relationships between these six areas of need and their components.  It is a major advance in expanding understanding that those facing serious illness have to deal with far more than the pain/consciousness choice and the quality/quantity choice, they also have to engage with all kind of other pressures, many of which have in the past hardly been dealt with by the health care system.  This is not just about end of life, but about all those facing serious health centered challenges.  I discussed the Brief in some detail here. (Disclosure: I provided some input and help NQF with presentations about the ideas, doing so from a patient partnering point of view.)

The areas are well shown in this chart:

advanced-illness-care-graphic-1016-01_fotor

Just looking at the list will convince you that any solution that fails to address all of these areas can not be said to be person-centered, because it is at best centered on only apart of the person, rather than all of them.Moreover, failure to address any of the six will obviously undercut all of the six, not just the one explicitly not covered.

The next step in making the vision behind the Brief a reality is a March 15 webinar.  This webinar (sign-up information below) will delve into case studies which demonstrate how physicians, nursing homes, home health agencies and others can integrate the preferences in this chart into existing quality efforts.

For some, hearing about these examples may be much more practical and realistic a way of thinking about moving forward than the more analytic approach in the paper.  Others may find the combination of examples and analysis the most empowering of all.  Indeed, the Brief itself does include some brief “snapshots,” examples of innovation in practice.

As the Issue Brief concludes:

Building on the movement towards person- centered advanced illness care, the time is now to bridge medical care, social services, and community assistance to form a stronger support network for individuals with advanced illness and their families and caregivers.

The webinar it a great place to start plugging in to this network.  You can register for the Webinar here.  Not to be missed.

 

 

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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Research Tends to Confirm The Importance of Patient Engagement For Patients To Be “Superagers”

The New York Times has an interesting article reporting research on the importance of engagement in helping people be “superagers.”  While I am not sure I like the phrase, with all its competitive implications, nonetheless the research is useful for those working to keep patients engaged not only with their own health situation, but also with institution and system improvement.

Specifically, the writer, Lisa Feldman Barrett, describes her imaging research into those with highest cognitive functioning in old age.

Our lab used functional magnetic resonance imaging to scan and compare the brains of 17 superagers with those of other people of similar age. We succeeded in identifying a set of brain regions that distinguished the two groups. These regions were thinner for regular agers, a result of age-related atrophy, but in superagers they were indistinguishable from those of young adults, seemingly untouched by the ravages of time.

What are these crucial brain regions? If you asked most scientists to guess, they might nominate regions that are thought of as “cognitive” or dedicated to thinking, such as the lateral prefrontal cortex. However, that’s not what we found. Nearly all the action was in “emotional” regions, such as the midcingulate cortex and the anterior insula.

My lab was not surprised by this discovery, because we’ve seen modern neuroscience debunk the notion that there is a distinction between “cognitive” and “emotional” brain regions.

But the most interesting part of the analysis is prescriptive:

Of course, the big question is: How do you become a superager? Which activities, if any, will increase your chances of remaining mentally sharp into old age? We’re still studying this question, but our best answer at the moment is: work hard at something. Many labs have observed that these critical brain regions increase in activity when people perform difficult tasks, whether the effort is physical or mental. You can therefore help keep these regions thick and healthy through vigorous exercise and bouts of strenuous mental effort. My father-in-law, for example, swims every day and plays tournament bridge.

The road to superaging is difficult, though, because these brain regions have another intriguing property: When they increase in activity, you tend to feel pretty bad — tired, stymied, frustrated. Think about the last time you grappled with a math problem or pushed yourself to your physical limits. Hard work makes you feel bad in the moment

One way of looking a this from a patient partnering point of view is that really engaging to improve the institution or the system can make you feel “tired, stymied, frustrated.”  But it is worth it in terms of maintaining capacity.  (The article makes clear that really vigorous exercise is also helpful, a lesson I am less willing to internalize — maybe extra blog writing will compensate for lack of exercise, I certainly prefer it!)

But the author is explicit:  “This means that pleasant puzzles like Sudoku are not enough to provide the benefits of superaging. Neither are the popular diversions of various “brain game” websites.

The article also links to a paper here, which, quoting the abstract, explains that:

Reviewing converging evidence from cybernetics, animal research, cognitive neuroscience, and social and personality psychology, we suggest that cognitive control is initiated when goal conflicts evoke phasic changes to emotional primitives that both focus attention on the presence of goal conflicts and energize conflict resolution to support goal-directed behavior. Critically, we propose that emotion is not an inert byproduct of conflict but is instrumental in recruiting control.

So, the complexities of true engagement would appear to be very good for the patient — and probably also for the professional care team.  Disagreement in the patient and professionals team is not a bad thing — unless it is not resolved in a positive and helpful way that includes improvement.