Category Archives: ACCC News

Creating a Caregiver Toolkit: 24 Tips for Caregivers

This is the final post in a two-part series on creating a toolkit for caregivers.

By Tricia Strusowski, MS, RN

Hands offering supportA recent symposium on Palliative Care in Oncology also called attention to the importance of ensuring that the needs of cancer patients’ caregivers are recognized. “Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”1  Caregivers are tasked with daily activities in the home and at work, potentially child/elder care, appointments, transportation, medication administration, meals, and medical procedures needed by the patient just to name a few.  We need to ensure that we are discussing the needs of the caregiver, as well as those of the patient, on a routine basis.

As navigators, we can provide education information for caregivers, support groups, or educational programs.  Make the caregiver a high priority in your navigation program.

Here are 24 practical tips that patient navigators can share with caregivers to help them through the process.

  1.  Give yourself and your loved one time to adjust to the diagnosis.
  2.  A positive attitude is beneficial for you and your loved one.
  3.  Giving care to a loved one with cancer requires patience, flexibility, courage and a good  sense of humor.
  4.  Good communication is essential to learning how to best work with your loved one.
  5.  Plan special times together away from the routine of treatment, such as a special evening  out for dinner, a movie or play, etc.
  6.  Talk about the future.  Hope is very important.
  7.  Being a caregiver can reveal hidden strengths and enrich your family life.
  8.  As a caregiver, you can choose to take the primary caregiver role or, depending on the level  of support from family and friends, divide it between two or more persons.
  9.  Being a caregiver can affect you emotionally, physically, and financially. For guidance, speak  with your cancer program’s social worker.
  10.  To better understand your loved one’s diagnosis, treatment and progress, be an active  participant during clinic visits.
  11.  Stay organized (e.g., use a journal or notebook during your loved one’s appointments).
  12.  Encourage your loved one to engage as much as possible in normal daily activities.
  13.  Give yourself permission to feel emotions about your loved one’s situation, and confide in a  friend or counselor who can provide insight and support.
  14.  Set up a list of activities that your family or friends can sign up to do weekly or monthly.
  15.  To help reduce your stress, make time for regular exercise, meditation, or some other form  of relaxation.
  16.  If care is long-term, arrange for extended periods of relief (e.g., take a vacation).
  17.  Attempt to maintain as much of your routine as possible, but recognize that you may need  to alter some of your daily activities if you are the primary caregiver.
  18.  Take advantage of caregiver support groups and credible websites for resources and  support.
  19.  Taking care of YOU is important too. Get adequate rest and nutrition, and take time for  personal care.
  20.  Select funny movies to watch together. Good humor is healthy for the body and soul.
  21.  Allow yourself private time to do nothing, or something important to you.
  22.  Spiritual support through prayer or the guidance of a spiritual leader can be good  medicine.
  23.  Designate a family member or friend who can help field phone calls regarding your loved  one’s progress.
  24.  If you have children in the home, assign them age-appropriate tasks to accommodate the  necessary changes in the household routines.

Source:  http://cancer.ucsd.edu/coping/resources-education/Pages/patient-tips.aspx
____________________________________________________________________________________

1 Doyle C. Palliative care for caregivers: Implementing caregiver support programs. Oncol Pharm. November 2016;(9)6. Available online at http://theoncologypharmacist.com/ton-issue-archive/2016-issues/november-vol-9-no-6/16928-palliative-care-for-caregivers-implementing-

Other Caregiver Resources are available from:
American Cancer Society
National Cancer Institute

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Patient-Centered Cancer Care: Personal Pain Goals

By Susan van der Sommen, MHA, CMPE, FACHE

Stethescope with idea light

Pain relating to a cancer diagnosis is one of the most feared symptoms by patients. Pain is subjective and can be attributed to multiple factors: spiritual beliefs, physical pain, and psychological, or social issues. Additionally, pain is a common occurrence that can dramatically affect a patient’s quality of life during and after cancer treatment.

A 1993 study performed by the Eastern Cooperative Oncology Group  (ECOG) notes that 86% of practitioners felt their patients were under-medicated for adequate pain control and only 51% felt their practice controls patients’ pain effectively. Poor pain assessment, a practitioner’s reluctance to prescribe, and a patient’s unwillingness unwillingness to take the medication were reported as barriers.

More recently, in 2014 the Journal of Clinical Oncology published a landmark study by David Hui and Eduardo Bruera that discusses an evidence-based approach to personalized pain assessment and management that engages patients in identifying a personal “pain goal” they find acceptable.

As cancer programs and clinicians strive to improve upon the delivery of patient-centered oncology care, the need for continuing practitioner and patient education related to management of cancer-related pain is clear.

Education was one of the many factors considered by the team at Park Nicollet Oncology Research and Health Partners Institute in Minneapolis, Minnesota, when they instituted their quality improvement (QI) initiative in 2014 focused on pain control in their cancer patient population. Patient satisfaction and out-of-pocket costs for patients were other factors, as they realized that they weren’t meeting their patients’ goals with regard to their level of pain control and that the high cost of some pain medications was resulting in high out-of-pocket costs for patients. The ultimate goal of the Park Nicollet team was to improve their patients’ quality of life through improved pain control and minimizing side effects while curbing out-of-pocket costs.

One of the most innovative and patient-centered approaches Park Nicollet took in its QI initiative was documenting a patient’s personal pain goals. A study published in 2012 notes that the assessment is entirely feasible in a busy outpatient setting and that patients are fully capable of establishing their desired pain relief on a scale of 1-10. The team at Park Nicollet experienced the same results. They increased documentation of their patients’ personalized pain goals from 16% to 71% in one year. Today, approximately 85% of patients report that they have achieved their pain goal. Read the full story of their experience here.

Allowing patients to determine their comfort level – with the appropriate education, of course – is one more way cancer centers can put their patients at the center of their care and encourage genuine shared decision-making.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.

ACCC Expresses Serious Concern Over the AHCA

By Leah Ralph, Director of Health Policy, ACCC

U.S. CapitolOn May 4, 2017, the U.S. House of Representatives narrowly passed the American Health Care Act (AHCA), a bill that would repeal and replace key portions of the Affordable Care Act (ACA). The bill now heads to the Senate, where it faces significant concerns over the projected decrease in coverage and increase in cost, and will likely undergo a substantial re-write.

While the bill faces uncertainty, the Association of Community Cancer Centers (ACCC) remains very concerned about the impact the AHCA, as currently written, would have on cancer patients’ ability to access comprehensive, affordable health insurance coverage. The bill violates a number of ACCC’s health reform principles, which were central to our recent advocacy efforts on Capitol Hill.

Previous Congressional Budget Office (CBO) reports estimate that 24 million more Americans will be left without coverage under the AHCA, while disproportionately increasing out-of-pocket costs for elderly, low-income Americans in the individual and non-group markets. Recent amendments to the bill also weaken protections for patients with pre-existing conditions, like cancer, and the requirement that insurers cover defined Essential Health Benefits, such as cancer screenings. The current legislation also effectively rolls back the Medicaid expansion and proposes to fundamentally restructure the Medicaid program, inevitably shifting costs to the states and squeezing Medicaid benefits for low-income cancer patients across the country.

ACCC will continue to work with Congress to advocate for meaningful health reform policies that protect patient access to appropriate, affordable health insurance coverage and decrease costs for the patient and the healthcare system.

ACCC urges its membership to contact their Senators opposing the bill as currently written.

Patient Navigation: Creating a Toolkit for Caregivers

The first post in a two-part blog series focused on support for caregivers.

by Tricia Strusowski, MS, RN

Two hands offering support

Several years ago, I facilitated a Patient and Family Advisory Council at our cancer center.  Our patients and families provided us with great insight on our program and helped us create our yearly goals.  On one occasion, one of our family members said, “Hey, what about us? The patients get these great journals, but we need resources too.”  This became our next project.  Two important takeaways from our experience:

  • Don’t Reinvent the Wheel: In creating a toolkit for caregivers, first keep in mind that there are excellent caregiver resources available through national organizations, so there is no reason to reinvent the wheel.
  • Be Concise: Keep your information short, educational, and practical. Our advisory council and countless focus group participants at many cancer programs have said, “Don’t give us so much information! If I get too much, I don’t read anything.”

For navigators interested in putting together a caregiver toolkit, read on for some basic but very good information to share with caregivers.

Remind caregivers that “the care you give yourself is the care you give to your loved one.” The stress of caregiving can take an emotional and physical toll. Caring for someone you love with cancer is undoubtedly difficult. The stress of caregiving can often manifest itself both emotionally and physically.  While caregiving is a rewarding experience that can strengthen the bond between you and your loved one, 60 percent of caregivers report symptoms of depression and other painful signs of strain.

Physical effects of caregiving can include:

  • Sleep disturbances
  • Weight fluctuation
  • Fatigue
  • Stomach/digestive problems (cramping, constipation, gas, heartburn, etc.)
  • Headache
  • Weakened immune system
  • Skin changes

Emotional effects of caregiving can include:

  • Depression
  • Anxiety
  • Feeling of isolation
  • Withdrawal
  • Substance abuse
  • Mood swings/irritability
  • Lack of concentration/memory

While your main concern is surely that of your loved one, it’s vital to care for yourself as well during this difficult time. If you experience any of the symptoms listed above, contact your physician and ask what your healthcare provider suggests. Fatigue is usually the first and most common complaint of caregivers, so ask your doctor about effective ways to manage your fatigue.

Encourage caregivers to ask for help. Provide some practical tips, such as the following:

  • You may have had offers of help with everyday tasks such as running errands, getting groceries, making a meal, taking your loved one somewhere, etc.  At first, most people are reluctant to accept these offers. Consider that friends, family, and neighbors really want to help. People will often say, “If there is anything I can do, let me know.” Take advantage of the offer!
  • When asking someone for help, you may want to go over a list of things you need assistance with, letting them choose what they’d like to help with.
  • Some people report being the sole caregiver serves to increase stress and may cause tension within the family. One caregiver’s solution to this problem was to create a weekly calendar where family members could record the tasks they performed for their mother with cancer. This way, tasks could be spread out evenly among her children.

Offer some coping strategies for the caregiver, including:

Set Boundaries. Primary caregivers tend to absorb the entire caregiving role. Care recipients often go along with this, preferring the care of the primary caregiver to that of a less familiar family member or a stranger.  You cannot do everything; set limits on what you can do yourself and what tasks can be delegated to others.

List things you need for self-care. Make a list of activities that will provide a pampering break from your caregiver responsibilities. Give your morale a boost by such activities as taking a hot bath, exercise, going out for a meal, or reading a book.  Post this list as a reminder to yourself and others in the household.

Plan for respite care. Obtaining those short breaks for self-care requires a plan for others to care for your loved one. Your plan should include the type of care required, hints/suggestions on giving the care so that routines are not severely altered. The plan should also include how often and for how long a time period the respite caregiver will be used.

Make time for laughter. A funny movie, a visit from a fun-loving friend, reading a book authored by a humorist, sharing a good joke can really help lighten things up. Humor helps keep frustration in perspective and minimize anger.

Keep in touch with friends. When caring for a loved one, the primary caregiver’s social life is often the first thing to go. You may think you do not have either the time or energy for keeping up with friends; however, it’s been shown that caregivers who remain socially active experience less depression and physical illnesses. Socially active caregivers are less overwhelmed by the responsibilities than their counterparts who turn down social invitations and lose contact with friends.

Shift gears. When you begin to feel rushed, you need to slow down. Researchers have found that hurrying often actually slows down caregiving activities. For example, rushing can led to delays caused by dropping items, spilling liquids, and misplacing keys, just to name a few. Try to slow down during caregiving and take time to relax throughout the day.

Keep it in perspective. Take time to read the morning paper or listen to the news. Staying abreast of what is happening in your community and the world helps put your problems in perspective. If the major topics of conversation in the house are focused on the health and care of your loved one, plan to set time aside when the conversation centers on some other topics. Mealtime is a time when this works well. Everyone participating in the meal can agree in advance to discuss other topics.

Plan for occasional indulgences and rewards. We all need some occasional pampering to maintain both physical and mental health.  Take time for your favorite snack, listen to music, or just take some “alone time” and enjoy whatever makes you smile.

Join support groups.  Members of a support group offer you understanding at a level others cannot because they are going through a similar experience.  They have real-life experiences to share including tips on how to cope.

Source: Caring to Help Others, A Training Manual for Preparing Volunteers to Assist Caregivers of Older Adults, 2000.


Stay tuned for Part Two: 25 Tips for Caregivers.

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Going the Distance: What We Heard at the OCM Workshop

By Leah Ralph, DIrector of Health Policy, ACCC

ACCC-OCM-CollaborativeWe are now 10 months into the groundbreaking Center for Medicare and Medicaid Innovation (CMMI) Oncology Care Model (OCM). Just a few weeks ago during the ACCC 43rd Annual Meeting, a number of OCM practices came together to share updates, pain points and successes, and to collaborate on innovative approaches to meeting OCM requirements during ACCC’s OCM Workshop.

Shaping Up
Participation in the OCM has been likened to “training for a marathon,” requiring cancer programs to do an honest self-assessment of their financial and operational capabilities, and double down on their investment in workflows, staffing, and data collection—all while trying to reduce costs and meet a number of beneficiary-level reporting requirements. EHRs (electronic health records) play a critical role in these efforts, and practices are finding that much of the quality and clinical data CMS is asking for is not readily accessible, requiring time-consuming chart abstraction and manual reporting. In addition to data analytics, other major challenges include:

  • increased staffing needs,
  • investment in IT systems, and
  • clinician education and engagement.

Some practices have hired full-time patient care coordinators—similar to research coordinators for clinical trials—to manage OCM requirements, including identifying and tracking patients, coordinating episodes and required measures, and billing the Monthly Enhanced Oncology Services (MEOS) payments.

While there is agreement that the OCM’s policy goals—improving care quality and reducing costs—are the right ones, operationalizing the program has proven to be far more complex than originally anticipated. Even by CMS. And, like all major payment reform initiatives, course corrections will be needed along the way.

Some Pain, Some Gain
Despite challenges, ACCC OCM Workshop participants are also finding that the OCM’s  “practice transformation” requirements are strengthening their programs. Many have taken a “good, hard look” at palliative care and pain documentation, care coordination, and end-of-life conversations. Others have implemented social work and dietitian services that they were not previously able to make available to patients. While many cancer programs were engaged in these activities in some form before the OCM, participation in CMMI’s demonstration program has made these components robust and consistent, improving patient care. One practice called it an “awesome byproduct” of the program.

Another byproduct? Practices are also finding that the OCM is creating an imperative for the C-suite to make certain investments and providing leverage with EHR vendors; requests that were previously considered optimization items are now considered “must haves” to meet OCM requirements.

Dealing with Data
Last month OCM practices faced their first big data reporting deadline and they also received their first feedback reports following the first episode of care, breaking out cost per episode and comparing performance to other OCM practices. These data came in a format that was not easy to interpret, and required several practices to outsource the data analysis and interpretation. With the feedback reports practices are seeing their spending on OCM patients, and getting a sense of how they may fare with performance-based payments down the road, but practices won’t see reconciliations against target prices until early 2018.

Watchful Waiting
Where OCM practices succeed and struggle carry important implications for all cancer programs and the transition to value-based care. As one practice put it, the OCM is “the pebble in the pond for us.” We should all be watching the ripples closely. And taking notes.

To learn more about the ACCC OCM Collaborative, visit  accc-cancer.org/OCM. All OCM participating programs are invited to join our online community at ocmcollaborative.org to hear what else your colleagues are saying.

 

Drug Pricing in the Crosshairs

by Amanda Patton, ACCC Communications

Drug pricing reform is in the news again this week as the Medicare Payment Advisory Commission (MedPAC) voted unanimously April 6 in support of the Commission’s multi-part Part B recommendations that include a Drug Value Program (DVP) with elements that align with President Trump’s interest in requiring drug companies to bid for government business.

ACCC17-Cancerscape“Despite Trump’s outreach to industry leaders and declaration of support for reducing drug prices, any attempt at price reform will be hard fought,” Jessica Turgon, MBA, ECG Management Consultants, told attendees last week at the ACCC 43rd Annual Meeting, CANCERSCAPE. The “how” of executing drug pricing reform will be “impressive,” Turgon said. She outlined five possible reform scenarios for lowering U.S. drug costs. The unknown: which reforms will the Administration stick to the most?

  1. Importing cheaper drugs from other countries in an effort to reduce average domestic drug prices. Pro: This might force drug companies to lower prices domestically. Con: It could result in higher drug prices worldwide.
  1. Increasing availability of generic drugs by requiring the FDA to speed up the approval process for generic versions of drugs. There is a similar option being put forward to hamper or make illegal the practice of “pay to delay,” which slows generic drug advancement. In fact, one study found that “pay to delay” has cost U.S. consumers $14 billion by keeping brand name drugs as the sole source product when cheaper, generic versions were available.
  1. Allowing Medicare to negotiate for drug prices using its leverage as the largest healthcare payer to achieve lower drug prices. This would require legislation or possibly execution through the regulatory process. However, the Congressional Budget Office has indicated this option would not have that great of an impact on federal spending, Turgon said.
  1. Increasing the use of value-based drug purchasing, i.e., paying for drugs based on the outcomes they achieved (i.e., treatment effectiveness) and not on a flat fee or other standard pricing approach. If this were integrated into protocols or pathways, it’s not clear how the financial results would be quantified, Turgon noted. However, as last year’s proposed Medicare Part B experiment showed, the impact would be very hard on providers.
  1. Scaling back the scope of the 340B Drug Pricing Program, for example, by revising the definition of a covered entity. The program remains in MedPAC’s crosshairs, Turgon warned. In FY 2013, covered entities saved $3.8 billion on outpatient drugs through the program; the number of 340B covered entity sites grew to 16,500 in 2013, a rise of nearly 8,000 sites from 2008. Turgon’s take-home message for cancer programs: Ask yourselves, “If I had to operate without my 340B program what would my cancer program, hospital, or health system look like?” Would it would likely have a significant impact on your health system overall? Is 340B funding “everything else” [e.g., services that are currently not-reimbursed, such as patient navigation] at your hospital right now?

Add to the mix, MedPAC’s recommendations for reducing spending in Medicare Part B. (Spending has gone up 9% every year since 2009, Turgon noted, which is not sustainable.) Briefly put, MedPAC’s recommendations fall into two track recommendations:

Track 1: Improve the average sales price (ASP) system.

  • Require drug makers to report ASP data and increase penalties for non-compliance.
  • Reduce WAC (wholesale acquisition cost), cut the add-on payment from 6 percent to 3 percent.
  • Require drug makers to give Medicare a rebate when the ASP price for a product exceeds an inflation benchmark.
  • Require the Centers for Medicare & Medicaid Services (CMS) to implement a common billing code for a reference biologic and its biosimilars.

Track 2: Establish a Drug Value Program

For this voluntary program, Medicare would contract with private vendors to negotiate prices for Part B drugs using tools like a formulary. The Drug Value Program vendor would negotiate directly with drug manufacturers. Providers would purchase all DVP products at the price negotiated by their DVP vendor. Medicare would reimburse providers for the DVP-negotiated price AND reimburse DVPs an administrative fee with a shared savings opportunity.

What Cancer Programs Can Do Now

What seems certain is President’s Trump continued interest in drug pricing reform. How (or if) reform is executed remains to be seen. MedPAC serves in an advisory role to Congress on Medicare issues—and whether Congress will consider MedPAC’s recommended changes to Part B is also uncertain. In the face of the many uncertainties surrounding drug pricing reform, cancer programs can still take proactive steps to address the rising cost of drugs, Turgon said. To do so, she suggested that cancer programs:

  • Develop and adhere to clinical pathways and protocols.
  • Determine the availability of evidence-based alternatives that are cheaper and comparable to high-priced drugs, and remove the higher-priced drugs from your formulary or tighten guidelines around use.
  • Deploy clinical pharmacists to educate prescribers about high drug prices.
  • Hold cost-of-care conversations with patients.
  • Reduce waste associated with high-cost drugs.
  • Keep negotiating with GPOs and wholesalers.
  • Identify signs of increases in drug prices as close to real-time as possible to avoid delays in taking action to minimize financial impact.
  • Keep the lowest possible inventory of high-cost drugs.
  • Keep communication lines open with senior administrators so they stay informed of the impact on the drug budget.

Final takeway: “Run your hospital-based cancer program as a private practice and know where your costs are,” Turgon advised.

Next Steps for Value Frameworks?

by Amanda Patton, ACCC Communications

ACCC17-Value Framework Panel (2)The mantra of “moving from volume to value” is ubiquitous in healthcare today.  So what do cancer programs need to know about evolving value frameworks in oncology? Attendees at the ACCC 43rd Annual Meeting, CANCERSCAPE, in Washington, D.C., heard real-time updates on two of the leading frameworks—ASCO’s work-in-progress Value Framework  and NCCN’s Evidence Blocks™.

Both value frameworks aim to be tools used in support of patient―physician shared decision-making according to panelists Stephen Grubbs, MD, FASCO, Vice President of Clinical Affairs, American Society of Clinical Oncology, and Robert Carlson, MD, CEO, National Comprehensive Cancer Network.

ASCO’s Value Framework was not built on drug pricing, but to have a discussion with a patient on potential financial toxicity and the benefit of the treatment in the context of how much the treatment will cost the patient, explained Dr. Grubbs. ASCO’s framework uses three primary parameters to calculate value: clinical benefit, toxicities of treatment, and cost. “Our goal at ASCO is to develop a tool that could be customized with information for each individual patient,” said Dr. Grubbs.

After receiving more than 400 comments on its original Value Framework draft, ASCO published a revised version in May 2016.  Grubbs made clear, however, that ASCO’s framework is still a work in progress. “It’s not yet ready for use,” he stressed.

In 2017 ASCO is working on improving the framework methodology, Dr. Grubbs explained, noting that a current weakness is that the framework is set up to compare a randomized clinical trial between two different treatments.  “If I have a treatment where I use drug A versus drug B, and than I have a trial that compares drug B to drug C—how do I compare drug A to drug C?” Work is underway at ASCO to address cross-trial comparisons and also to “anchor the net health benefit score in some meaningful way,” Grubbs shared. Finally, ASCO will continue work with patient advocates and patients to identify endpoints that are meaningful for patients.

On the other hand, NCCN’s Evidence Blocks are operationalized. NCCN’s goal was to create a “flexible value system that could be used to develop each patient’s equation for what is valuable,” said Robert Carlson, MD, CEO, National Comprehensive Cancer Network. NCCN Evidence Blocks are built on five metrics:

  • Effectiveness (efficacy)
  • Safety (adverse events, toxicities)
  • Data quality
  • Data consistency
  • Affordability

The Evidence Blocks are presented in a graphic format so that a user can look for “30 different options in about 4 or 5 seconds and come up with regimens that would be optimal for a specific circumstance,” Dr. Carlson said.

Like ASCO, NCCN intends the Evidence Blocks to support a patient-centered approach to integrating a value discussion into everyday practice. “We look at Evidence Blocks as a conversation starter, not an answer,” Carlson said.  “We don’t tell the patient, because the Evidence Block looks like this, this is what you should do. It’s a question of what’s most important to them.”

Currently, 33 of the NCCN guidelines have Evidence Blocks associated with them. By the end of 2018 all of the NCCN guidelines that have systemic therapies should have Evidence Blocks, according to Carlson. NCCN also intends to expand the Evidence Blocks into other treatment modalities. “We are now starting to look at other modalities, radiation oncology, surgical oncology, and diagnostics . . . in terms of the same sort of scales,” he said.

Rounding out the discussion, panelist Ali McBride, PharmD, MS, BCPS, The University of Arizona Cancer Center added perspective on the cost/value discussion as it may unfold on the frontlines of care. “Many patients may not be able to afford the 20% copay cost for IV therapy, let alone the out of pocket cost for many oral therapies,” he said. “We have to spend a lot of time detailing out those costs for patients, and if they can’t afford it, we have to say, then what’s our next step in that guideline pathway?”

All three panelists noted the need for financial transparency for patients and providers as one component of the value discussion.

In closing, panel moderator Christian Downs, JD, MHA, Executive Director, ACCC, asked panelists to consider what the value framework discussion might look like 10 years down the road.

Acknowledging the difficulty of making any predictions about the future shape of the oncology value discussion, Dr. Carlson envisions technology playing a pivotal role. “My own expectation and hope is that within a decade we will have computer-based systems that patients are able to interact with directly and help define and discover their own value system,” he said. Such a system would enable patients to indicate if they were more concerned with neurotoxicity or cardiotoxicity, for example. Plus the system would also have the capacity to query payers so that patients could know the financial impact of their therapy.

Big data (if the promise is realized) may change the face of value frameworks, noted Dr. Grubbs.  The potential of extensive real-world databases will bring “much more information on what happens to patients outside the narrow clinical trial that has the best, the most robust patients. . . [and extend to] what happens in the real-world. . . . if we had a big data system that had all this information about what happened to everybody and you could really home in on what happens to a 75-year-old person who was not in the clinical trial and have the cost data, you might come up with a very different looking value [framework] from what we’re showing you here today.”

Finally, as value frameworks continue to evolve, community cancer programs and practices have an important role to play, panelists agreed.  “There’s a huge reservoir of expertise and experience in community oncology, and we’d love to tap that, to learn from that. [One of the] ways you can help us, is to continually give us feedback in terms of whether we have it right or wrong. . . . talk to us,” Dr. Carlson said.

Dr. Grubbs concurred, adding that community oncologists are key to making value frameworks functional. “When you see this come out, please make comments back to ASCO on how to make this better, because nobody is going to get this right…right from the beginning.”

CANCERSCAPE Kicks Off with Perspectives on Policy and Business

by Amanda Patton, ACCC Communications

Last week’s events on Capitol Hill provided a dramatic backdrop for the ACCC 43rd Annual Meeting, CANCERSCAPE, March 29-31, bringing together hundreds of oncology professionals from around the country for insights, strategies, and perspective in the midst of healthcare reform ambiguities.

Cancerscape 2017-keynote panelIn a keynote session Thursday morning, policy insiders Kavita Patel, MD, MS, of The Brookings Institution, and Dan Todd, JD, Todd Strategy, LLC, shared insights on possible next steps toward Affordable Care Act (ACA) repeal or repair under the Trump Administration. ACCC Health Policy Director Leah Ralph moderated the point-counterpoint discussion covering what went wrong with the House Republicans’ American Health Care Act (AHCA) legislative effort at ACA repeal, mounting political pressures on Capitol Hill, legislative or administrative options to effect ACA repair, flaws in the design of the faltering individual insurance exchanges and what may (or may not) happen next, and whether the Administration will act on the hot button issue of drug pricing.

Cancerscape 2017 keynote panel 2Asked for one final takeaway that attendees should bring back to their programs to help their colleagues understand the policy landscape, Dr. Patel shared this perspective for frontline clinicians and administrators:

“No matter who is the party in power there’s always going to be this emphasis on cost. I don’t see the pressure to decrease costs going away. It may come in the form of programs like MIPS and commercial programs like ACOs and patient-centered medical homes, but as a physician who is in all of those programs, it’s all about having me [as a physician] understand where I’m over utilizing care . . . . If there’s one takeaway . . . it’s not to sit . . . and wait to see how things shake out.” Start looking for where you have unwarranted variation, where you can start implementing programs that actually matter to patients, Dr. Patel advised. “Take back some introspective ability to look at your variation, look at your costs, look at all the things that fall into P & L for administrators and how do you translate that to where clinical care is delivered.”

Dan Todd left attendees with one final advocacy takeaway: “It’s a new Administration with training wheels still on. . . they’ll ultimately get their balance. . . . If you have priorities, educate your congressional members on [them]. . . your voice is really, really important.”

For more, read OncLive’s coverage of the session here.

Conway-The Advisory BoardThe morning’s second session shifted the focus outside the Beltway to explore emerging cancer care delivery trends and potential impact on the business of providing cancer care. Lindsay Conway, MSEd, of The Advisory Board, briefed attendees on The State of Today’s Cancer Programs, highlighting five key trends shaping the delivery and business cancer care delivery:

  • Healthcare reimbursement and reform is at a pivotal point. Uncertainty continues around the future of the ACA and the insurance exchanges.
  • Increasing numbers of cancer patients with comorbidities requiring enhanced care coordination. From 2000 to 2010, the number of Medicare patients with multiple chronic conditions grew 22%. Proactive steps in care coordination for this population include regular distress screening to identify issues early and devising and implementing care maps for navigators.
  • Telehealth technology bringing care to patients where they are. These technologies and emerging patient-centered tools—ranging from real-time virtual visits, to phone apps, to patient portals, to remote patient monitoring—have tremendous capacity for expanding patient access to care
  • Growth of healthcare consumerism requiring cost and quality information. There are growing online resources for healthcare review, cost and quality information. To address consumerism in cancer care, it’s important for cancer programs to provide information to help patients select the right provider and the right services.
  • Genomic medicine is transforming cancer care. With the rapid pace of change in this area, cancer programs are challenged to invest carefully as they move forward to integrate precision medicine into practice.

More coverage on this session is available here.  To learn more about the ACCC 43rd Annual Meeting, CANCERSCAPE,  visit us at accc-cancer.org.

A Strong Voice in Challenging Times

By Amanda Patton, ACCC Communications

ACCC Capitol Hill Day 2017On Capitol Hill yesterday, in nearly 100 meetings with legislators and staff, ACCC advocates spoke out sharing the real-world impact of policy on cancer patients and cancer care delivery in communities across the country. Walking the halls of Congress were ACCC member physicians, nurses, administrators, pharmacists, social workers, financial advocates, and other members of the care team—from cancer programs and practices large and small—representing 23 states.ACCC Capitol Hill Day 2017

In conversations with legislators ACCC advocates urged that Congress:

  • Protect patient access to care, encompassing access to comprehensive affordable insurance coverage
  • Maintain meaningful access to clinical trials
  • Reject the NIH funding cuts proposed in the President’s FY 2018 budget and instead increase funding for NIH and the National Cancer Institute that is critical to our federal research infrastructure
  • Support federal oral parity legislation

Rep. Higgins-ACCC 2017 Hill DayDuring a lunch address, Congressman Brian Higgins (D-NY), who co-sponsors the Cancer Drug Parity Act of 2017 (H.R. 1409) told ACCC members, “Your constituents are our constituents,” and “your presence here [on Capitol Hill] is very important.”

In these challenging times, as Congress continues to deliberate reforms to our healthcare system, ACCC advocates spoke with a united, strong voice, encouraging their legislators to set aside politics and put patients first. Summing up the experience, Hill Day participant ACCC President Jennie R. Crews, MD, MMM, FACP, said, “Being on Capitol Hill today, it’s apparent that health reform is not dead and we need to remain vigilant that protections are there for our patients.”


ACCC Capitol Hill Day kicks off the ACCC 43rd Annual Meeting, CANCERSCAPE. Follow the meeting conversation on Twitter using #CANCERSCAPE as we live-tweet top takeaways. Stay tuned for blog updates with meeting highlights.

Journeying Beyond the Physical: Addressing a Patient’s Spiritual Concerns

By Susan van der Sommen, MHA, CMPE, FACHE

HC provider cupping patients hand (for web)Based on evidence presented in the Institute of Medicine’s 2008 report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” the American College of Surgeons Commission on Cancer (CoC) has phased in a new standard – 3.2: Psychosocial Distress Screening. The goal of utilizing a psychosocial distress screening tool is to ensure patients’ emotional and psychological needs are being addressed – in addition to their physical disease and symptoms.  CoC Standard 3.2 includes the following description of the psychosocial assessment:  “This assessment will confirm the presence of physical, psychological, social, spiritual [emphasis added], and financial support needs and identify the appropriate referrals as needed.”

In an article published in the March/April 2017 edition of ACCC’s journal Oncology Issues, the Reverend Lori McKinley outlines how Mercy Health lived up to its promise to “make lives better – mind, body and spirit” by incorporating a rating for various spiritual concerns of a patient or loved one. The Spiritual Care Team at Mercy recognized that just addressing emotional and physical needs of patients is not enough.  After performing an extensive literature review and developing connections with community-based organizations, the Mercy team made significant quality-related, evidence-based changes to their electronic health record (EHR) to accommodate a new and improved distress screening tool. Learn more about their pilot project here.

Indeed, a patient’s spirituality is directly related to their quality of life and has a direct correlation to giving  patients meaning, a sense of purpose and understanding during a critical time in their lives. In “Spirituality in the Cancer Trajectory,”  author C.M. Puchalski writes that “Spirituality is an essential element of person-centered care and a critical factor in the way patients with cancer cope with their illness from diagnosis through treatment, survival, recurrence and dying.” Her article goes on to identify the link between spirituality and “inner peace, gratitude and positivity” when facing a life-changing diagnosis such as cancer. She writes that with proper support, a patient may begin to view their cancer diagnosis as a positive life-changing experience, ultimately paying greater time and attention to higher priorities in their lives. This is not possible if a patient’s spiritual needs are not addressed routinely throughout their care.

Puchalski further points out that religion is but one type of expression of spirituality so non-faith based organizations should not dismiss the concept or its importance. In fact, she writes, a majority of patients want their oncologist or healthcare professional to address their spiritual concerns and integrate their needs and wishes into their care plan.

Not surprisingly, this is what the Spiritual Care Team at Mercy discovered during their pilot program. With the addition of four questions addressing spiritual concerns in their distress screening tool, they were able to more effectively connect patients with their faith, alleviate fears, and assist patients with addressing their trepidation at the end-of-life. Isn’t that what all of us want for our patients?

Reference

Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol. 2012;23(suppl_3):49-55.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.