Contents...Have speakers speak at ATC, NATCO, ITNS. Be more visible. Get on talk shows--Dr. Oz, John...

Open-ended Questions

This section provides the answers to the three open-ended questions that appeared in the survey. I have grouped similar responses

together and created sub-categories within each question to make it easier for you to scan areas you are interested in.

Contents

WHAT COULD UNOS DO TO MAKE OUR ORGANIZATION MORE TRANSPARENT? 3

POLICY- AND COMPLIANCE-RELATED RESPONSES 3

COMMUNICATION-RELATED RESPONSES 5

EDUCATION AND TRAINING 7

REGIONAL, COMMITTEE, AND BOARD MEETINGS 9

UNET 10

MISCELLANEOUS 10

WHAT CHANGE HAVE YOU NOTICED MOST AT UNOS IN THE LAST YEAR? 12

COMMUNICATION EFFORTS 12

POLICY 14

INFRASTRUCTURE 16

COMPUTER SYSTEM 17

LIVING DONATION 17

United Network for Organ Sharing June 3, 14 Page 1

DO YOU HAVE ANY OTHER SUGGESTIONS/COMMENTS YOU WANT TO SHARE? 18

UNET/DONORNET 18

POLICY AND ALLOCATION 20

COMPLIANCE 22

EDUCATION & TRAINING 23

COMMUNICATIONS 23

BOARD/COMMITTEES AND REGIONS 25

POSITIVE COMMENTS 25

MISCELLANEOUS 26


What could UNOS do to make our organization more transparent?

Policy- and compliance-related responses

Communicate better and UNOS employees need to understand the policies better and how to be compliant with policies. Anytime I call with a question, I get transferred to someone else because the first person doesn't have the answer. Then I usually have to leave a voicemail requesting a call back. Most times, my calls are not returned the same day so it takes excessively long to get an answer to my question. Usually I'm needing a response quickly & I can't get one quickly. Even the site surveyors don't know what can be entered into UNet. If you're a site surveyor, you should know the fields that can be entered into donornet and whether you can enter past a decimal point.

Having several hundred different interpretations of policy compliance serves no one but the OPTN contractor who takes credit for dings delivered to programs. I have seen very little improved patient care come as a result of site and desk surveys as a result, but much wasted labor trying to chase compliance.

Policy interpretation is my biggest complaint. For each UNOS survey we've completed, each surveyor has had distinctly different ideas about how a policy should be applied/enforced. That makes it VERY difficult to be compliant!

provide more guidance documents on how to apply policy

Policy language is way too complex, very difficult to understand especially when dealing with urgent situations ( organ allocation). The policy language is most often vague and the UNOS support staff are not well versed to help out over the phone. They tend to re-read the policy. If the policies were easier to understand and interpret we would not be seeking input on interpretation on a daily basis.

Have clearer requirements, seems like there is a lot of interpretation required.

Have policy makers visit transplant center for Q+A for each organ group quarterly.

I receive a lot of emails about policy updates and changes. It's really helpful, but sometimes so much I become numb to the changes since it does not pertain to my specific organ group. I also receive emails on regional meetings. I wish they could be more local to the LA region or have rotating meetings between LA and other cities.

Make policy changes more clear and visible. Also, guiding us on how to comply with policy changes. Example- The PHS guidelines. It was very difficult to get answers to our questions about this and it would have been helpful to just tell us what and how we needed to make this change.

Make it easier for members to find policy changes and communicate reminders when new policies go into effect and what members need to do to comply.


make Public comments, policies/bylaws easier to access and understand for those who are not as familiar with UNOS/OPTN.

Make policy updates and notices easier to find on the website.

Make your policies easier to read. I know you’re reviewing them.

Policies need to be easier to read and search. I know this is being worked on though.

Policy changes are difficult to see and often difficult to understand which makes it hard for us to know how to adapt.

learn about important topics before proposed policies are drafted.

Let the transplant community learn from mistakes rather than hide those and let us all struggle.

Occassionally, I find out about policy changes that were not reported in Transplant Pro, notices or via OPTN website. Suggest that a policy change is reported in all communications at the same time.

Often policies are changed despite opposition by individuals, associated organizations and even regions. This makes people feel as if their opinion doesn't matter. I think that after a policy is changed, there should be some publication of who opposed it and why it was changed anyway. This may already be published somewhere, but it's not easily accessible.

Better best practice guidance. New requirements are frequently published with no assistance on how to accomplish compliance. Also, every survey we have had, was surveyor specific in terms of compliance.

Give more examples on how to use updated policies or forms

better policy communication

clearer process on the committee and policy work

Policy update communications and effective dates are nearly impossible to stay on top of.

Provide an overview of the structure of transplant policy organizations and their areas of oversight to transplant professionals.

Certification should have representation.

Send out better communications to necessary policy changes! Educate your staff, particularly the Help Desk when policy change has been implemented to help coach professionals on necessary changes. Changes to policy should be sent out independent not embedded four clicks deep in minutes of a meeting on the website. They should be sent out to each director and associated Director to implement change readily and facilitate transparency.

Some policy/open comment periods seems to be heavily weighted on MD. Some policies have surprising outcomes such as IA in TAH changing to 1B. Makes no sense to our team. What committee made this decision? Also some of the infection and pump failure "guidelines" seemed to have been made by some


personnel who may not have worked with VADs long term. Not sure when this was open to public comment.

Education on policies made available

Webinars on policy, resources, etc to be accessed on our individual or staff schedule for continued education and reinforcement.

provide more webinars concerning policies, provide a cross reference to CMS policies

More webinars on policy would be nice. Some of the policies are confusing and some we don't necessarily run into issues with alot, so when we do need them feel uncertain.

It would be helpful if UNOS were quicker to respond with appropriate language to give us guidance in policy changes. For example, I have been waiting for months to get language to add to our consents in regards to KDPI.

Keep members abreast of upcoming changes and providing members with adequate notice and training on expectations to comply with changes. Make policy updates and notices easier to find on the website.

when members are made not in good standing, address specifically what is required for them to return to good standing

Communication-related responses

Offer new members to receive all forms of communications/newsletters/magazines available.

Being bombarded with information from all types of organizations...it would be easier to keep up to date if the email updates, magazine articles, etc were shorter and with quicker to the point reading with the option to read a more detailed story later. Mostly right now I get overwhelmed by information and don't read much of any of it.

better policy communication

Use plainer language.

Simplify the language

Simplification

Be an open book

Be clearer about HRSA's requests--otherwise the policies that move through the committees take on their own momentum without retaining the original notion.

Be cordial during surveys and have an understanding of the process

Be more forthcoming with expenses

be more inclusive

Communication of policies and decisions to "all" members is the key; improved significantly with Transplant Pro.

The Transplant Pro is a great improvement over previous methods of communication. Increased knowledge about OPOs and including donation in messaging (donation and transplant community, not just


transplant) would show an effort. Increasing OPO representation on committees.

Continue to keep the public informed on UNOS matters

Continue to publish committee and board meeting minutes. UNOS also needs to publish key learning opportunities discovered through case reviews completed at the MPSC.

Ensure information is getting distributed to front line transplant professionals.

Good relationships -open communication

Have fewer notices. I think a weekly update would work better. We get so much information, it is hard to read and the same notice goes out numerous times. Maybe the repeat notifications could be designated as such, ie second notification, third notification, final notification.

The newsletter is a big step and also increase in educational webinars

Have speakers speak at ATC, NATCO, ITNS. Be more visible. Get on talk shows--Dr. Oz, John Stewart. Improve finding policies easier on your website. It's very difficult. Not user friendly. Get advice from social media professionals. Get out of the old world (e.g., IE 9 as the browser for UNET? Thank goodness, after so many years, you finally got the funds to upgrade your version of UNET to allow accessibility w/various platforms) and into the new. Create new apps for the Androids and iPhones.

I receive a lot of emails about policy updates and changes. It's really helpful, but sometimes so much I become numb to the changes since it does not pertain to my specific organ group. I also receive emails on regional meetings. I wish they could be more local to the LA region or have rotating meetings between LA and other cities.

Encourage the various committees to provide more frequent updates through Transplant Pro. The regional meetings are great but it's too infrequent to hear about their initiatives. Also, keep reporting on any updates and/or collaborations with CMS. Finally, provide lessons learned from MPSC violations so other centers can prevent the same mistakes.

I think the communications are timely and relevant. I think UNOS is transparent

Have volunteered to participate in additional activities, and received no response at all...not even "no".

increase wide-spread communication of how transparency is achieved

increased use of multiple mediums to communicate among its members. e.g. video, audio, live chats, webinars, blog, social media

inform better how decision making is accomplished

share listing delisting, transplant information among centers. I am not sure why this information is considered confidential.

regional reps should call the administrators quarterly to see how things are going and if they have questions


Reach out more to staff other than doctors and administrators. Nurses, social workers, and financial coordinators are on the front lines following those policies/regulations. Before change is made to those areas of practice, THOSE professionals need to be heavily consulted as they often have foreseen the issue and have potential solutions to it. They are the experts in their fields. Also notification of changes to only administrators misses those who need to follow through with the change. Seeking out input from professional organizations that represent these three groups is essential in more than a newsletter sent out each person individually. The "all" emails are often deleted in way overbooked schedules. The organization boards will respond as elected officials for their members.

More communication directly to supporting professionals

include pediatric nephrologists

allow txp centers to have more involvement in what goes on in UNOS

Have more interaction with transplant coordinators

Include transplant staff

don't know- communication is fairly good, just seem to focus on doctors.

Greater outreach to the general public on important issues.

cooperate with other societies

Be seen more in the eyes of the Public.

Have more involvement from the community (patients and general nephrologists)

Provide additional information on process improvements in the transplant community in a confidential manner. JCAHO did this by implementing the national patient safety goals. Perhaps there is a way to communicate issues that impact all centers and PI recommendations to improve processes.


just keep up with the many communications across all media (web, e-mail, UPDATE, etc.)

Keep communicating.

Keep members abreast of upcoming changes

Make policy updates and notices easier to find on the website.

Continue in the direction they are currently heading with proposed changes

Education and training

Educate the lay community.

Education on policies made available

Educational seminars or webinars that are more frequently available.

More webinars on policy would be nice. Some of the policies are confusing and some we don't necessarily


run into issues with a lot, so when we do need them feel uncertain.

Do in service at the hospital I work in.

Describe "UNOS Private"; also perhaps add representatives from other Committees (administrator, operations folks, compliance folks) when making policy changes/new policy as sometimes policies have a major impact on practice/day-to-day operations.

Engage in further outreach to teach about the transplant process at major medical centers.

In-service on transplants, points offers, vs payback zero antigen mismatch.

More education present directly to people who are being evaluated and listed for transplantation.

more info to patients about how lists work

More stories about how decisions are made.

More webinars and education for transplant centers and coordinators.

more webinars and educational information.

The newsletter is a big step and also increase in educational webinars

I don't think it is an issue of transparency as much as it is an issue of training. It is TOUGH to go into UNOS and figure anything out on your own without an experienced coordinator around to help you. It feels weird to call because nobody feels sure that if you ask

something awkward that you may have attracted unwanted attention to your program.

Webinars on policy, resources, etc to be accessed on our individual or staff schedule for continued education and reinforcement.

Provide additional information on process improvements in the transplant community in a confidential manner. JCAHO did this by implementing the national patient safety goals. Perhaps there is a way to communicate issues that impact all centers and PI recommendations to improve processes.

More overview on what constitutes a points offer This is very difficult for the new transplant coordinator to understand.

Offer free webinars for administrators on managing UNET, different sections of the PRIMER, regional reps should call the administrators quarterly to see how things are going and if they have questions

There are only (2) transplant centers in MD. Perhaps a face to face in-service giving us the details of what all UNOS does and how it does it.

Please visit our pediatric transplant center and provide a general presentation.

maybe visiting a site

Provide members with adequate notice and training on expectations to comply with changes.



Regional, committee, and board meetings

include social workers on your committees so that the social workers could help get your message out.

I think that nurse transplant coordinators should be on the board.

if non-management had an opportunity to participate in regional meetings

Encourage the various committees to provide more frequent updates through Transplant Pro. The regional meetings are great but it's too infrequent to hear about their initiatives. Also, keep reporting on any updates and/or collaborations with CMS. Finally, provide lessons learned from MPSC violations so other centers can prevent the same mistakes.

Make it easier for newer people in the field to serve on the committees and be accepted to help in committees.

Make it easier for non-administrative transplant members to serve on committees.

Web cast Regional meetings.

Make key meetings available online for all.

Make regional meetings available by conference call or rotate their location so they are not all far away. Cost prohibitive to attend.

One thing I would strongly suggest is moving the regional meetings so that everyone has the chance to attend w/out incurring large expenses. For example, the region 7 meeting is almost always in Chicago - I

remember it being in MN once. Can't we alternate the venue so that more members have the chance to attend? This would lead to a better understanding for everyone. It seems to me that the people who know most about UNOS are the people that serve on committees - this excludes a very large portion of people that work w/ UNOS.

Make finding regional information easier on the UNOS site

more clarity on selection of regional reps to national committees

The Exec committee of UNOS not sure how they are nominated/elected

I don't really understand how people get selected for committee service. Some committees seem to be loaded with "at-large" members. These committees appear to be too large to be effective.

How are "At Large" members appointed?

Select OPO Representatives at large other than AOPO Board Members. American Board of Transplant

have more input into the committee structure

Would like to see more involvement with the Transplant Centers. Meetings are heavily OPO weighted.

More face to face meetings with physician stakeholders at annual professional meetings

I did send in an application for the new Data Advisory Committee, but have never heard anything more about


it. Have members been chosen, did I not qualify, etc. More timely communication would be helpful.

Have volunteered to participate in additional activities, and received no response at all...not even "no".

Seek committee members from the ranks not from the leadership at transplant centers. You need to be proactive in the development of new leaders in the organization.

open up more opportunities for people to volunteer to be on committees and extend the amount of time they can be on a committee from 2 years to 3 years

Rotate the UNOS region meeting to other states within the region so more can attend

Select experts to sit on newly formed committees rather than bend to the "transplant politics" as evidenced by most recent selections

Recruit board/committee members from the ranks rather than only from a select top group of individual

The UNOS committees and Board are a "club". There should be more transparency and open elections

There should be more voting by the general body for important rule changes

It is in general not a very transparent organization. Important decisions are made by small committees

regional reps should call the administrators quarterly to see how things are going and if they have questions

Spend more time helping OPO address and enforce policies. The process by which committee members who are not regional representatives and board members is not as transparent as it should be.

UNet

Easier access to data reports that are required for CMS and UNOS site surveys

Include recipient and donor (de-identified) HLA data for immediate access in UNet for post-transplant monitoring, e.g. for patients who transfer care to other transplant programs. Delays in obtaining this data impairs patient care.

Separate out peds and adult data. Donor network reports do not do this.

MAC COMPATABILITY---to be able to view documents and attachments on donornet through IPAD

Re-write the form explanations so that EVERY field is fully explained. How to enter, what to enter, etc.

They also need to invest in developing UNET it seems to be out dated.

Miscellaneous

one person to call for assistance

helpful in understand the local environment and provide good suggestions for changes


It is not that I do not understand UNOS policy and procedure, I simply do not agree. There is no effective oversight of OPOs, the metrics to evaluate performance are more about protecting the system than caring for the patient, etc.

making surveys better- for instance, I go to all regional meetings, but the above choices don’t make any sense as they are NOT daily

Release updates of current UNOS staff

Evidence-based practice

Since I do not have a good working knowledge of how things are done, and it isn't actually part of my job to do this, I am unsure how to respond. I get answers to my questions from staff here who are knowledgeable, and do understand there is some hierarchy of need stats that determine how organs are allocated.

There should be 'UNOS teaching' as part of fellowship. I tried to give a kidney allocation lecture once and was totally overwhelmed reading and interpreting the policy to condense it into a 1 hour talk. I learned a lot, though, but I suppose most fellows never learn.

Too new to respond effectively

Transparent with what?...pending policies, surveys, government lobbying?

UNOS has deviated from its intended purpose as framed by NOTA. It has become a useless organization that does nothing but adding to the cost of healthcare by issuing senseless policies that hardly serves any purpose.

UNOS in its current format is the worse that a government run organization has to offer. UNOS has become a bullying organization that by virtue of its meddling with patient care is harming patients and their families who are in need of transplant services.

instead of framing self-celebratory survey like this, have an independent organization to assess transplant community opinion of UNOS as an organization. and have the result reported to the HHS secretary and congress, have the report available publically.

UNOS serves at DHHS pleasure. It is a bureaucratic organization that often loses its way. This is a severe failing.

When an OPO files a concern about a transplant program. At least tell the OPO if their concern turned out to be deemed valid and if there is any corrective action required by the transplant program.

Positive comments

UNOS is on a much needed and well accepted course change. Keep up the great work.

I feel as though the organization is doing an outstanding job

I feel that UNOS is quite transparent already.

I feel they are transparent but probably would serve the OPO and transplant community better to be wait until they are in align with CMS in order to capture the same eligible under the same definition. Hopefully, this will be the case in the near future.


I feel you are doing a great job and I get a great deal of my information from reading the news updates. Haven't seen a magazine, but would love to get that as well.

I have no doubts, that if I wanted to find the information, I could find it.

I think it is doing a great job at this.

They're doing a fine job!

Fairly transparent currently

As I only work in a donor hospital, I don't have a thorough knowledge of UNOS' work. From what I read, it seems that they do a very good job.

I believe they are doing that now. Reaching out to all health care transplant professionals

You do a good job at this.

You do a pretty good job, but this questionnaire is not a good one as some answers are not applicable to the question.

I believe they are transparent.

do a nice job already!

I think UNOS does a fine job in this area.

I think UNOS is already a pretty transparent

I think you do a really good job.

Not an issue.

nothing

What change have you noticed most at UNOS in the last year?

Communication efforts

An attempt to make communication clearer. I still think it could be done better with new policies that come out.

Attempt to make UNOS more user friendly

Better attempts at clarity in communication

Much clearer language more transparency

Better communication

Better communication and attention to transplant center feedback.

Better communication with members, more e-mails. I believe you are trying to make the policies clearer to the reader.

Better compatibility with Apple products (move to IT)

Better electronic communication from multi media

Better information about policy changes

Better organization of email based communication

Communication is better and more effective, for example Transplant Pro

Efforts to get policies in plain English, provide education about policies. Really like the updates from Transplant Pro


I think Transplant Pro is a great resource to remind me to stay current. I make a point of checking each one to make sure that I stay current for my organization.

Improved communication regarding changes through Transplant Pro.

Improved communication, Transplant Pro, emails, webinars.

Transplant PRO very informative but it wasn’t new in the past year. Like the links in it.

Transplant Pro

Transplant Pro is more organized.

Transplant Pro is very helpful

More use of Transplant Pro to emphasize changes

Transplant Pro was new to me this past year. The website was updated and once I got used to the changes, found it to have a good deal of information.

Transplant Pro; nice formats for emails with objective, audience, etc.

Online publication

more communication through e-mails & newsletters

communications improved overall, both in quantity and clarity of information

Effort to clarify policies and put them in plain language

Decrease in the number of repetitive emails (good thing).

Frequent communications

I like that UNOS is trying to be more "user friendly" and get information out to us.

I think communication has gotten better.

I think UNOS has worked hard to ensure that expectations are clear and easy to understand.

Move to provide more electronic communication.

Improved electronic communication

Improvement in communication as noted above

Increase in the fee to list. More communications.

I've noticed an increase in trying to communicate more.

Language has gotten a little more simple.

Leadership, proactive sharing of information to protect patients, much more aligned with constituents

Less paper communication

more clear communications

More communication

more communication about things I cannot understand the relevance

More communication than before. Things are better worded in more common language.

More communications

more communications from Regional Administrator, very nice idea, please continue


More e-mail based communication. Greatly help.

more emails providing information that is needed to do our jobs.

seems to be more policy changes and more communication sent out to educate the transplant community

More information

More information - can still do a better job of sharing

More information - less clarity

noticed that they are trying NOT to overwhelm us with emails...which I appreciate!

The frequency of communications.

the increased frequency of emails alerting me to changes in policy

UNOS is making concerted efforts to make communications clearer.

More information related to upcoming changes

more policy emails

more streamlined communications

More timely communication that is easier to understand.

more updates

updates

Updates and communication related to Implementation of KAS.

Website is getting easier to navigate

UNOS employees are very helpful and focused on assisting transplant centers to be successful.

Policy

Allocation

Allocation and push to greater sharing

exporting every decent liver for share 35

share 35 for liver allocation

HCC criteria

HCC extra points application

HCC listing of pt more difficult

HCC policy

Implementation of alterations in policies of organ distribution.

Increased effort to make policies easier to find and easier to interpret.

Increased focus on Living Donation. Clarity of policies and regulations with the rewrite project.

KDPI added, living donor evaluation criteria and policy changes

KDPI and liver allocation has changed.


There has been alot of communication about changing to KDPI / and kidney allocation

Kidney allocation

Kidney organ allocation changes

Plain language change is helpful, however the HLA guidelines seem to have eased up.

Plain language policies

Policies and HCC application

Policies are confusing

Policy changes

policy language simplification

Policy notices coming via email; summary of policy notice with link to actual policy.

Plain language re write

Policy Rewrite

Policy rewrite initiative

Policy rewrite is increasing understanding. Response time is quicker.

Policy rewrite is massive and because of that is very confusing.

policy re-write was helpful. thank you!

Policy rewrite. Smart, pretty well done. Now for the interpretive guidelines

policy rewrites

Policy rewriting

The plain language rewrite in progress.

Some policies and the cross walk makes it easier finding information

The updated policies written in better format and language.

Reviewing all policies and trying to update them and make them more user friendly.

Trying to make policies more user friendly

Review of new changes explained at ASHI meeting.

Policy proposals are moving faster.

Updates on allocation specific policies

variances in staffs understanding of policy.

More policy emails

OPTN policy changes/updates (not sure on timeline)

Education

A stronger emphasis to educate and inform

Focus on education and expanding resources. The webinars make information accessible to many more TXP professionals

More frequent webinars.

More Webinars and Educational opportunities

Stronger educational staff with great ideas


Infrastructure

The infrastructure is much improved.

As a POC/PAC committee member I have noticed and approved of the 'tightening' of the organization, id - definition of a problem, clarity in what is in a proposal, etc.

Changes put into place to provide the needed IT infrastructure upgrades

Demand for more accuracy and slimming down forms for faster completeness

Dept. of Evaluation and Quality is busy cleaning up very old data.

Documenting work orders when I call in with a question

Move towards improving the IT department and hopefully getting current with data and policies.

New executive director.

New executive Director. New kidney allocation policy.

NONE - am hopeful after Mr. Shepard spoke at AOPO last week about direction of UNOS.

New regs that affect my role.

Prompt response to requests/inquiries.

Response to public outcries

Asking for additional feedback

Surveys and quality improvement efforts.

The staff has started auditing more forms and requesting corrections

Less mention of trying to collaborate with CMS. Meanwhile, CMS has released another transplant survey.

There have been more programming changes which have been sorely needed.

Needs Improvement/Suggestions

It has become slower than ever to get anything done and policies changed.

The IT cost estimates are far out of line with efficiency and expertise and slow everything down by years.

Becoming more punitive and bureaucratic.

Enforcement of policies at the transplant center level. More self-reporting examples should be provided to assure that all centers are practicing with safety as a first priority.

it is becoming increasingly more dysfunctional.

It seems like the items reviewed are whatever seems to be hot at the moment

Less focused on improving and facilitating patient care and advancing transplant medicine, more interest in protecting themselves from litigation and poor public perception


Lots of emails with too much written material to decipher. Need to find a way to more concisely convey necessary info.

Make better interactive webinars

Many more policies changes being passed with quicker implementation dates. This can be a problem with making changes so quickly due to the electronic medical record systems.

More adherence to government policies, especially within committees.

More information - can still do a better job of sharing

NO SRTR data!!!

Seems to be more of a government organization that an organization designed to support its membership

Too many emails. Delete many as they are not role pertinent most of the time. Or a decision was made without input being sought from the Society for Transplant Social Workers about a new policy. Looking forward to seeing this change. We want to be involved in improving care for our patients. We have many ideas, connections, and much experience and education.

UNOS is ever increasingly subservient to DHHS. Policy suffers. Also, UNOS kneejerks whenever a single event occurs. Pages of policy come out after an untoward event. No other area of medicine or nursing is like this. In many ways, UNOS makes people afraid of their own shadows. We are losing common sense. It is the era of blind, lemming-like bureaucracy.

Not as clear

Computer system

Changes to HCC reporting

changes to TIEDI forms

changes with KPDPP

Computer technology upgraded.

missing or incomplete status change forms for heart listed patients

delay in response for requested reports (HCC and STATUS 1 heart patients)

TIEDI info

Some advancements in IT and Unet upgrades. Updated kidney allocation policy finally moving forward.

The DonorNet home page changes

The new donor ID system

Unable to use test resources tab.

up-dated registration on donors

Work being put into the KPD program in UNET

UNet updates, Committee changes

Living donation

Focus on living donors.


I have noticed an increase in information that needs to be addressed during the donor psychosocial. In addition, I am aware that UNOS has required certain language be included in the consent form.

Mixed messages on what is required to show a living donor not seen for follow-up. Some UNOS personnel want date last seen and others don't.

more info on living donors

the "checklist" for the living donor changes was most useful. Would like to see more of this.

There seems to be a big push for the paired donor exchange program, and living donor follow-up regulations.

Miscellaneous

I noticed we are getting "pre OR" offers. Often it is too early to tell if we would have interest.

No longer the need for transplant agreements between transplant centers and referring dialysis centers

Do you have any other suggestions/comments you want to share?

UNet/DonorNet

Continued work on computer system and interfacing with updated systems such as Windows 7 and Apple.

It would be very helpful to have the waitlist work on Mac products.

Would like to be able to open attachments on donornet using ipad, mobile devices, etc.

Update the web site needs to be compatible with ipad when we don't have access to computers

The UNET Mobile app is still very weak, and difficult to use.

The UNET Online Help Manual could use some overhaul. A number of the field explanations are ambiguous and leave a lot of room for inconsistency among Centers, when outcomes are calculated to the decimal point.

I would like to see the UNOS Site Administrators functionality upgraded so that adding new users is streamlined, rather than requiring a separate member search and group addition for each organ type separately.

Why is adding a new user to UNOS such a problem. I know I am not the only one who has said this for MANY years, and it still stays the same. For heaven's sake, make it a little bit easier!!!

I would like to see UNOS have more training tools available. There is very little information available to train new coordinators on how to do their work in DonorNet. We have used the tutorials but these are very basic. I would like to see more advanced workflows for closing match runs, more complicated allocation, etc. I feel there is no standard way to do this work and


nothing is in writing to verify we are doing things correctly.

For multilisted pts who have been transplanted, is there an alert email UNOS can send, so we can remove our patient from the list sooner. I don't routinely look at the report in UNOS of the multilisted, and transplanted at another center.

I feel that Tiedi needs to be updated with current methodologies. Some of the fields are outdated and need to be changed.

"I was once told there is a dashboard on each transplant program. If that's true it should be shared with the center so we can mimic the data and use it for QAPI.

I want more efficient way of retrieving center data by customizing reports not offered on Unet.

I would like to be able to run reports by user name. An example of this use would be to see UNOS/waitlist activity by user. Also to view offer acceptance/declinations.

I would like to know more about the TCR, TRR, and TRF forms. In particular, for patients who have multiple organs is there any way that the repeating questions can auto populate from one organ to the other?

Transplant Confirmation Report should be in monthly order.

I would like to see less repetitive information requested on the forms. Example: pre-txp information listed on

the waitlisting form has to be answered again for the same time period on the TCR and TRR forms.

Please write out explanations and expectations for each and every form data point. So that there is no guessing or interpretation of how the forms are completed.

Please, please let there be a playground or at least a "forms" area so that when the form you haven't touched in a year like a 1A exception shows up that you have had the opportunity to look it up and be sure you are familiar with it.

the teidi forms need to be more intuitive. It is not a good use of our time to enter the SAME information for listing and on teidis for registration

When problems with forms, data request, etc become apparent, it seems like it takes a very long time for those to be corrected.

Need to continue to develop definitions and appropriate guidelines for required data submission, i.e. DDR's

I would love to see all of the information in DonorTrac Plus pulled over into UNET, or the two merged in some way.

I'd like to see basic changes implemented in UNet and Donor Net.

I have sent some emails and phone calls regarding my suggestion that Donor UNOS number be provided when requesting Donor HLA Typing so that there are two numbers, we as a transplant lab, can ensure we have received the correct information from UNET when we get the request answered. I have never


received a reply on this and I have not heard where this has been considered as a possible change. I also sent in a request to volunteer my time in any form, and did not receive a reply regarding that either. I wanted to become more involved in the processes. I do want to commend all the staff I have come in contact with. The help desk for UNET has great people, all my encounters have been handled professionally and timely. Great staff!!

Make Donor Net friendlier

The UNET website uses a very faint font that is difficult to read. The worksheets, when printed, are impossible to read and thereby useless."

PLEASE make the font a darker color to review data in organ offers. The blue is painfully too light given the necessary small font size.

PLEASE make a work sheet to fill out for MELD score exceptions - cutting and pasting the required data is so cumbersome and inefficient. I suspect it is not easy for the RRB reviewer to read it, and it certainly is not easy to submit the info. It's been 3 1/2 years - way past time to improve that process!

Please Please PLEASE create a "print" button for UNOS TIEDI screens for printing living donor UNOS IDs in a larger font so they reproduce when faxing or scanning to be transmitted to exchange centers. They continue to be very difficult to read.

Update Tiedi software. It is obsolete in the HLA area.

HLA typing in UNet should require a 2nd review before finalizing, similar to ABO.

We lost our ability to look up DD HLA typing the way we used to last year. No we do this round about way, but we need to do it within a few days. If we miss the window, we need to call our OPO for the data.

When opening match runs, have 100 PTRs per page automatically. L

see #4---sometimes, OPOs when contacting you with donor offer have minimal attachments scanned into computer...I have to call and ask them to scan in---I feel all the data should be in there before the transplant centers are contacted to adequately evaluate donor info-

IT costs are major obstacles to getting things done that need to get done. Please try to find a way to make IT support available for policies that will help patients.

Invest in the development of UNET.

Set up searches or reports for end users to reduce the burden on UNOS

Would like to see more transplant staff level involvement/focus from UNOS. More standard reporting from OPO in UNET. Each OPO reports what they want, clamp time is missing, can't tell if both kidneys are offered, one kidney is offered etc.

Policy and allocation

The policy write up/changes are very confusing to read and very laborious. It's not clear what is new/what is


old sometimes. Also, there should be more time from when it goes from Final Rule to when it has to be implented at the txp ctr level. We have made changes when the policy is out for comment only to find the Final Rule is significantly different. I have found the UNOS personnell also do not have the same understanding of how to implement the policy. Policy can be vague which allows room for broad interpretation.

In trying to determine which policies UNOS is abiding by currently, it is hard to tell between the proposed re-written policies, the proposed new policies, and the current policies. It is hard to find a policy you are looking for when it comes to histocompatibility.

Multiple policy changes with multiple effective dates is getting difficult to manage. UNOS and CMS MUST get on the same page for an OPO to run as efficiently as possible. For example, the definition of eligible donor definitely needs to be the same for both parties.

Too much jargon in policy language. Lack of clarity regarding requirements and recommendations. Poor coordination with CMS. Oversight is aggressive and heavy handed.

OPTN focused: Keep archived drafts of policies available online so that users can reference time-specific policies. Also store the proposed draft changes to a policy in a separate document from the current policy so as to not confuse readers with what is current and what is proposed. Store policies and other documentation in more user-friendly formats. For example, in addition to storing the OPTN Policies as

separate PDF's they could also be combined into a single PDF so that users can search between sections for common

I'd prefer if policy change dates were shared more clearly and frequently. One example is the recent update from CMS high risk to PHS high risk policy change on 12/18/13 that was actually the date for the new policy release date.

alerts before and on the day a new policy goes into effect, especially if they effect wait list patients

need for policy changes in a more timely fashion

Need to also take into consideration the amount of resources/cost on behalf of a Transplant Center to implement frequently/extensive policy/bylaw changes especially when duplicate efforts between UNOS and CMS.

Being an on-site procurement transplant coordinator it has been my observation that it has been taking longer to get allocation off the ground. Once started it can take hours longer than I could handle on my own. I understand that the donor center is busy but keep in mind, often times us procurement coordinators are sitting watching the allocation and sometimes that is all that is required before setting an or for recovery.

Making policy changes quicker

Access should not trump outcome. There are too few organs. We should work to improve 5 to 10 year outcomes.


Changes that increase the work load at transplant centers are very difficult as Centers don't up-staff when this happens. For example HCC patients require and extraordinary amount of UNET work to maintain their priority on the list. It would be great if this was considered when making/changing policy.

Continue to be proactive in updating policies to keep up with changes in technology, transplant outcomes and organ allocation to improve patient care.

I am concerned that the policies of organ distribution/allocation are made without regard to improving one's own OPO's donor rates. Many years ago, the president of UNOS (Hunsicker) pointed out that if there was the same excellent organ acquisition rate in the best OPOs throughout the country there would not be as significant differences in waiting times between regions. Thus, I would like to see more of a focus on improving OPOs than moving organs.

Still feel that UNOS is too heavy-handed and punitive when it comes to policy. Instead of working with transplant professionals to help us keep up with policy changes, it's more common to be monitored and penalized; UNOS promotes a culture of fear and "us versus them". I know I'm not the only person who feels this way; have had the discussion with other transplant professionals across the country.

I would like more information on the upcoming changes related to kidney transplant listings and prioritization (dialysis start date versus waiting time)

More policies need to be made to speed up the time transplant centers take to make a decision about accepting thoracic organs

Needs more programming resources in order to implement policies

It has always seemed to me that UNOS policies are membership driven instead of the organization having its own clear agenda. The problem with the membership-driven aspect is that the biggest or most powerful organizations (OPO) or institutions push forward policies that are in their best interest.

Please do something about the liver/kidney offers, to offer a kidney alone is a waste of kidney coordinators time, there has to be a better way. There needs to be a cut off point of offering kidneys nationally. To be woken up with "trash offers" such as you are number 2000 is a waste of our time

I would like the coordinators that answer the phone to be more knowledgeable of policies then they currently are. On more than one occasion we called on separate occasions with a question on what we need to do and received different answer every time. If they do not know I would like them to get with someone who does and get back to me in a timely matter.

Compliance

Sometimes the guidelines can be too vague and open to interpretation making it difficult to know if you are doing things right - then you get audited and find out you were doing it wrong!


Would like to see a policy clearly stating which transplant center is responsible for completing recipient follow up forms. In my case, forms have been transferred into my "Expected" and I have no knowledge of the recipient.

When there are policy changes, it would be nice to have better guidance on implementing the changes. For example, the new PHS guidelines, there was a lot of confusion and we were getting conflicting information from UNOS regarding interpretation of the policy which caused significant confusion.

I would like to see compliance (i.e. what transplant program needs to do to avoid MPSC) included at the end of each policy rather than in a separate document like the evaluation plan. It is complicated to have to skip between OPTN policies, the evaluation plan, bylaws, and the various appendices to gather this information. I would also like to see sample forms that have been determined to be compliant. Currently we have to make these out of thin air and hope that the surveyors will deem them to be acceptable.

Better "tools" to ensure transplant programs know what to do to be compliant (example: sample ABO verification form, living donor "checklist")

When communicating policy changes it is important to me to know how the DEQ will survey for compliance

when UNOS auditors come to centers they all have to review everything in the same way - not what the auditor thinks it means

On 12/31/13 notified of desk audit, due 1/17/14. Called surveyor with a question on 1/10/14, learned that survey would not be done to reduce workload on center - by then, many hours had already been spent.

Education & training

Annual "UNOS"webinar for staff that don't attend to highlight changes? the "year in review"?

offer ABTC seminar web cme

I would like to see UNOS have more training tools available. There is very little information available to train new coordinators on how to do their work in DonorNet. We have used the tutorials but these are very basic. I would like to see more advanced workflows for closing match runs, more complicated allocation, etc. I feel there is no standard way to do this work and nothing is in writing to verify we are doing things correctly.

The UNET Online Help Manual could use some overhaul. A number of the field explanations are ambiguous and leave a lot of room for inconsistency among Centers, when outcomes are calculated to the decimal point.

Communications

A lot of the written communication is difficult to understand

alerts berfore and on the day a new policy goes into effect, especially if they effect wait list patients


Communicate with other international transplantation societies or groups

Busy, short concise sharing of information or a snapshot of pertinent updates would be beneficial. Then, if interest is present we could look into the information further.

I would appreciate more information as coordinator as to describe the new allocation system for the patients. Will there be a written brochure for the patients? When will this be published and printed for staff and patients?

I would like the recent language regarding medical and psychological risks associated with donation to be included in your booklet " Living Donation: Information you need to know".

Keep up the feedback to the community about patient safety, research, sharing effective practices. It helps us all get better.

I would like more information on the upcoming changes related to kidney transplant listings and prioritization (dialysis start date versus waiting time)

Omit having committee policies go through the POC and Executive Committee twice.

our jobs are busy within our own centers, so while the information is widely distributed it's difficult to carve out time to independently read and maintain knowledge surrounding UNOS issues. We become dependent upon our txp administrator to keep us up to date on pertinent changes etc.

There are far too may Emails and changes that one almost becomes numb to changes.

Too many e-mails. Major changes would be easier to identify if the frequency of e-mails was less.

Too much jargon in policy language. Lack of clarity regarding requirements and recommendations. Poor coordination with CMS. Oversight is aggressive and heavy handed.

When there are policy changes, it would be nice to have better guidance on implementing the changes. For example, the new PHS guidelines, there was a lot of confusion and we were getting conflicting information from UNOS regarding interpretation of the policy which caused significant confusion.

It seems the information is not easy to access, seems too complicated.

Revise the way potential changes are transmitted to the public. More coverage to the general public when requesting feedback of policy changes.

Website needs to be updated

I always find it very difficult to navigate the UNOS site. It seems policies are very hard to find.

Please engage in more outreach. Sending representatives to teach members of transplant teams without much experience would be a welcome addition


Board/committees and regions

Committees should be made up of members who do these jobs on a daily basis. Too many committee members are physicians who are far removed from the daily ins and outs of what we do. Membership should not be determined by a resume or credentials, it should be determines by who can best contribute and knows the real issues and concerns.

UNOS needs new blood both to energize the committees, but also to give the experience to upcoming leaders in the field of transplantation.

Involvement of the transplant centers in policies via committee membership. I see it all as being eligible only if you know someone who can appoint you.

How to become a board member representing pediatric transplant population

It is difficult to get on a committees."

Omit having committee policies go through the POC and Executive Committee twice.

"Our regional meeting is held in Dayton, Ohio. It would be appreciated if the driving distance was shared more equally for everyone. Suggest northern Ohio or Indiana or southern Michigan. Dayton is near the southern border of Ohio.

Would like to see more standardization across the regions

Positive comments

Help Desk is wonderful!

I am grateful for the relationship between UNOS staff and the transplant center at NCBG.

I appreciate the efforts to be supportive and transparent, as opposed to prescriptive.

I have had to call and ask questions. Each time I call the person responding to my calls are informed and helpful. If they do not know the answer they find someone who does and they get back with me.

Thank you for conducting this survey."

Sally Augier for President!! She is the most helpful person ever.

I feel the new leadership (CEO) is doing a fine job.

"It is always great working the staff.

I need to do my part to try to stay informed!

keep up the good work :)

Keep up the good work! I still love receiving the UNOS Update magazine and hope that doesn't go away. I generally stop and read it cover to cover when it is received assuming I have time. If not, I read it as soon as I can. Love all the stories and the information contained within.

I do want to commend all the staff I have come in contact with. The help desk for UNET has great people,


all my encounters have been handled professionally and timely. Great staff!!

Miscellaneous

I think the personnel change applications could be streamlined a little bit - they are cumbersome to complete and I’m not sure that all of the data requested is really necessary.

Still hard to find the transplant surgeon and physician UNOS criteria for primary. Hidden too much in policy.

UNOS needs to adopt to changing health environment and lobby to change focus of Final Rule.

Very few or hardly any expertise of health care policy on Committees : experienced transplant physicians and surgeons are not best public health policy.

MPSC desperately needs to change"

More transparency of how the organization operates and things get done

Finances aren't shared - most nonprofits put up their operating budget, UNOS hides it. Transplant officials would like to know where the money that comes from fees go.

Not sure the Strategic Plan is still current -- haven't heard of updates or changes.

Publication on Minority issues. The minority population is growing at rapid rate in all major cities....

Have an independent organization to run a survey of the transplant community regarding approval rating of UNOS in general; report it to the secretary , congress and have it publically available. Current sorry state of this organization is not what was intended in NOTA, and OPTN charter.

How does one go about becoming a UNOS member?

I believe UNOS is responsible for addressing underperforming programs and should stop programs that are underperforming from transplanting

I have a recommendation of a funding source for UNOS

I hope you do not discard these comments as from an unsatisfied surgeon. They are widely held in the community. UNOS benefits from new people coming into the field with no knowledge of background, history and most importantly deep knowledge of the system, how big a system should be and how to treat patients locally.

I suggest re-evaluating the likert scale used for question 2. Many of the activities listed are not offered on a daily or weekly basis

Several of the items in item #4 do not correspond well with timeframes within responses provided. As examples, I do not recall that we have daily, weekly or monthly surveys; nor, do we we have daily, weekly or monthly nominations or opportunities to serve on committees, etc.


The answers to survey question no 2 are not appropriate. Better answers would be often, sometimes, rarely and never or some version of that rating scale.

It seems to me that requiring a right heart cath is an invasive procedure for someone with pulmonary hypertension. Could there be other parameters that are not as risky for pt. while awaiting transplant?

Listing fees are too high

progress too slow

UNOS sends too many surveys. Every time I turn around someone else from UNOS is sending a survey.

We need to focus on the regulations for making organ offers. Centers put a provisional yes as stall tactics without fully reviewing offer or speaking with surgeons. 4-5 hours are wasted just to get a no. Some centers are especially guilty of this often.


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