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.

What To Expect From Death Itself, and Opportunities for Patient Partnering

I remember vividly, from when my sister was dying back in 1997 in the second hospice in the world (link to my parents’ book full text),  how important it was to my mother that when asked what she feared most, she was able to say “the death rattle” and that Dr. Robert Twycross was able to reassure her both of the insignificance of the sound, and that he would in any event make sure that it did not occur.

So, I found a new article by Doctor Sara Manning Peskin in the New York Times particularly powerful and empowering. Under the headline The Symptoms of Dying, Dr Peskin first points out that as the “letting go” gets closer, deaths become more and more similar.

You and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

And, PLEASE PLEASE, note that last sentence.  Only a couple of days ago, at dinner at our retirement community, it turned out that several of our friends, informed, educated, with great access to services, still had no confidence that they would have a “good death.”

The article  (which is the first of two) then goes on to outline those various stages and symptoms the body may face: The Death Rattle, Air Hunger, and (the wrongly named) Terminal Agitation, and how they are addressed.

I guess the reason I find this relevant to patient partnering is that I think it is really important for anybody facing serious illness to be given information about all of this as soon as possible.  Having that on the table — or at least the general reassurance that it can all be managed when the time comes, will just make it far easier for an honest cooperative partnering discussion about whatever else needs to be engaged.  My guess is that most of those providing care will also become more relaxed when they know that patient and family want to know what will happen, and are willing to share their worries and have them addressed.

A Patient Partnering Perspective From the London Tower Fire

A general practitioner from the neighborhood near the tower, Ahmed Kazmi, wrote this on the British Medical Journal Blog to describe his visit to an already well-staffed community center:

As a doctor I felt slightly redundant. The centres were very well staffed as so many doctors and nurses had volunteered. I sat down on the floor and played with some children. I didn’t use my stethoscope those hours I was at the centre, but I still feel I was a doctor. I think that sometimes empathy and witnessing someone’s grief are as important a part of our role as procedures or prescribing.

He also noted:

.  .  .  A group of young black Muslim boys, who were fasting themselves, walked around with jumbo pizzas offering everyone slices. A group of ladies arrived to offer face painting for the children.  .  .  It was striking how all of the usual prejudices or divisions, which so frequently surface, were all suspended. People from all walks of life were empathetic and loving to each other. For a period at least people stopped being black, white, Muslim etc and were just “human.” If this type of unity is possible in times of tragedy, I think it is realistic to aim for it all the time.

Sometimes presence and connection is the best, or even the only, healing.  And part of partnering is developing the ability to sense the needs of the other, and find a way to help meet them.  It is also not just about the individual “patient” but of the whole community and environment.  Thank you Dr. Kazmi.

 

 

The Impact of Public Data About Doctors on the Partnering Relationship

In a development that I would normally welcome without any reservation, the wonderful news and investigation website ProPublica has just launched a new service called “Vital Signs” about doctors.

Today we’re launching a project called Vital Signs that puts the most important information from across all of our health care projects in one easy-to-use place, and can alert you when we get new information or when something happens you should know about right away, for example if your provider is now paid more per patient than 90 percent of peers, which may be a sign of overtreatment or use of more costly services.

Our health care databases, including Dollars for Docs and Prescriber Checkup, have long been among the most popular features of our site, and are a key part of the mission of our data team — to help people use data to make better choices and live better lives. We’ve spent years collecting, cleaning and analyzing data about hundreds of thousands of doctors and other health professionals across several different interactive databases. Vital Signs lets you see what matters most across all of them, and dig deeper to explore even more data.

My only, and highly limited question, is whether there is a risk that patients will look up their doctor and misinterpret the data.  Now, this is much more reliable that a Yelp review, or other subjective info.

So, my answer, is that doctors should all look themselves up, welcome and perhaps encourage questions from their patients about the data, and respond with candor and openness.

In return, we patients have to remember that these kid of tools do not necessarily fully explain data, and that these tools should generally be considered the beginning of a conversation, rather than a replacement for it.

I would also encourage major medical institutions to look at the data and see what might be needed to introduce, explain, and contextualize it.  Indeed, they might find things that they need to know about, but did not!

This all takes time, but in the end it can strenghten partnering, which in the end both saves time and improves quality.

 

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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The Patient Perspective on Integrated and Interoperable Medication Lists

As many know, the Office of the National Coordinator for Health Information Technology at HHS ( directed by Dr. Vindell Washington) has been working on the whole vexed problem of integration of data from different providers. More information on the agency is here.

In particular, it has been focusing on one of the most urgent problems from the point of view of us patients is the lack of any ability to get integrated information on all of our medications, regardless of who prescribed them, and where we obtained them — let alone what we should be doing with them, and when.  This is obviously a particularly complicated and significant for those of us with multiple conditions.  (By the way, almost all seriously ill people are considered to have multiple conditions.)

So it is exciting that there is now a focused effort at HHS, known as the MedList Project, to develop such online tools.  It takes no great  genius to recognize the huge potential to improve patient care, reduce errors, reduce unnecessary costs, and minimize adverse drug interactions, that the initiative offers.

So, I was excited and honored to be part of discussion organized at HHS to help them find out what patients wanted and needed.  It was one of the most exciting and stimulating discussions that I have been in for a long time.  Here are some of the ideas that really struck me.  Of course, many may not be practicable or just not happen, but it is good to know that thinking in a broad and visionary way is happening.

Making sure that the list is truly integrated — that it includes information from all providers and prescribers, and that it includes nonprescription drugs.

Including updating tools so that information about updates flows routinely to all who need to know about them, and so that accuracy is maintained.

Eliminating the current endless repeated updating of the prescription list every time we see a provider anywhere.

Letting users change the display format of any medication list, so that they can see it in a table, in a list, by when in the day to be taken, the cost to them (or the insurer), by type of likely side-effect, etc.

Making it easy for users to find and deal with the many different names that are used for drugs.

Integrating the descriptions of the pills and packaging, and indeed including a tool that lets you put the drug in front of the camera of your device, and get a full read-out on it. (Imagine how many misuses of medication that might help avoid.)

Including tools so that we can see options for the scheduling of our medications as they relate to meals, activities, and sleep.  Right now, if you are lucky, one of our providers sits down with us and goes through our “day,” making suggestions, but it is an informal process and likely to be ad hoc.

Including in the tools an ability to ask for suggestions for scheduling alternatives to deal with particular problems.  For example, if you feel nauseous before or after a meal, or if exhaustion as a particular time is a worse or more significant problem, then you could tell the tool, which could then make alternative suggestions.

Having the tool notify providers when you change your schedule or what drugs you take.

Integrating the tool with the smartphone reminder and confirmation systems.

Including links to all the information on side effects and instructions, and providing links so we can ask for more detailed instructions.

Facilitating integration with pharmacies at medical institutions and the retail industry.

Facilitating integration with menus at residential communities to watch for possible issues.

Including tools to report possible side effects, and perhaps even to allow patients as well as experts to look for patterns in such reports.

In any event, I hope that folks agree that these would make a huge difference.  Please make additional suggestions in the comments section below.  I will make sure that they get to the appropriate folks.

In any event, it seems to me that this is a fabulous partnering opportunity.  First, we, as patients, can help make this as good as possible.  Secondly, it will provide us for ways to input data that will help the professionals make the system better.  Thirdly, on a case by case basis, it will help us partner with our own providers to improve outcomes.  Compare an earlier blog on Advanced Care Planning Tools.